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Essay 330 - Fetal anomaly

Posted by MR R.
MR

A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks]

Fetal abnormality creates a great deal of anxiety among parents and they should be dealt very sensitively.I will arrange the consultation in a quiet room along with her partner or accompanying family member.I will tell her that the anamoly scan has identified a defect in the nueral tube (spinal cord)development of the baby called spina bifida.I will tell her that this can happen in a smaller proportion of healthy pregnant women and this is not her fault.The extent of the neurological damage is difficult to assess by any kind of imaging modality.However most of the fetuses with spina bifida either die in utero or if they progress to date death is ensued in a few hours to days.I will tell her that she has the option of either continuing the pregnancy or terminating the pregnancy.She will supported with her decision.If she wishes to terminate this will be arranged in the ward and it involves medcines given vaginally to start the process.If she wishes to continue the pregnancy, antenatal clinic with ultrasound review will be arranged periodically. I will tell her that she can discuss this with her family and get in touch with us with her decision.I will give her leaflets regarding spina bifida.I will document all the findings and the discussion in her notes.I will enclose the pictures of the scan in her notes.I will arrange a follow up appointment for a consultation to discuss her wishes.If in the mean time she is unable to feel fetal movements she will have to get in touch with us on the number given in her notes.

(b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]

I will tell her that the possible cause of fetal demise could be the spina bifida.However this can be confirmed only post mortem examination of the fetus.This will also give us if there was any other abnormalities or syndromes associated with this.Examination of the placenta and swabs from the baby are taken routinely.There are 3 diffrent types of postmortem 1. External examination and X rays - which gives very little infirmation and does not involve examination of internal organs.2.Limited postmortem - This involves only examination & histopathological assessment of the organs specified by the patient and karyotyping.However this might miss a few things..3.A full post mortem - all the internal organs are examined.All the organs are replaced as much inside the baby\'s body and the incisions are made so that they are not obviously visible.Pictures and hand and feet marks are usually taken before psotmortem examination.The results of the postmortem examination might not reveal any other abnormality.However this ciuld be helpful to come to terms with her loss.If it does reveal any other abnormality this could be helpful for counselling for a future pregnancy.If she opts for post mortem this could delay the funeral and the results can take upto 3- 4 weeks.Funeral arrangemnts (hospital / home) will be arrnged as per her wishes.I will give her a leaflet.I will give her adequate time to discuss this with family.If she decides to go for the postmortem I will get her to sign for the appropriate consent and arrange 6 weeks follow up appointment to discuss results.I will arrnge bereavement counselling and give spina bifida support group addresses.Contraception will be discussed for the mean time.I will advice 5 mgs Folic acid periconceptually for a future pregnancy.
Posted by sonu P.
a) This women must be very anxious and distressed, so should be seen without delay and be dealt with sensitively by a professional who has experience in dealing with the situation. Its preferable to see her with a supportive family member. I will review the scan report for the type and suspected level of defect and any other associated anomalies. I will explain to her that this an abnormality where the back bone fails to fuse completely at a certain place leaving the covering of spinal cord or the cord itself exposed. I will tell her that this not a lethal anomaly but is associated with varying degree of weakness of lower body, inability to control bowel and bladder functions and unpredictable degrees of neurodevelopmental delay and mental retardation. The problem of sexual dysfunction is a difficult subject to deal at this point. I will offer her a detailed scan and possible fetal MRI at a fetal medicine unit to find out the exact site of defect. I will offer her counselling by the neonatal team and paediatric neurosurgery team. I will make her aware about the inability to correctly predict the overall outcome antenatally. If there are other anomalies, she should be offered an amniocentesis for karyotyping and acetylcholinesterase essay. I will tell her that after complete assessment and counselling by the experts, she can choose for termination of pregnancy if she wishes. If she chooses to continue with the pregnancy, serial growth scan will be offered and time, place and mode of delivery will be decided in conjunction with the fetal medicine unit expert taking mother’s wishes into account. Any pregnancy complications like polyhydramnios will be dealt with accordingly. I will give her information leaflet, follow up appointment if further queries, and contact details of support groups e.g ASBAH.

b) I will express my condolences and approach her with empathy. I will offer her bereavement counseling by the specialist midwife in the unit and will make sure that she is pain free and is willing to talk about post-mortem.I will try to elicit her attitude towards a post mortem examination and assure her that is completely her decision once she is well informed. I would tell her the options of a complete, partial or limited post-mortem examination. The advantages are that we might find other anomalies which are not always identifiable by scans. In that case there is a possibility of syndromic diagnosis which would have implications on predicting the recurrence rate. She should know that there is a chance that that we might not be able to give her the exact cause of intrauterine fetal demise. I will inform her that a full post-mortem may delay the funeral arrangements. She has the choice whether she wants to do funeral privately or hospital can arrange for a dignified disposal. She and preferably her partner needs to sign a consent form. She should be aware that full post mortem may include storing organs or taking biopsies for future research or as teaching aids or she can choose for all the organs to be put back in the body after the examination. If she declines full post-mortem, a limited examination in the form of taking x-rays and scans should be offered. She should be given a post natal follow up appointment between 6-12 weeks to check on her physical and emotional recovery and to discuss the post-mortem report.
Posted by Chitra.s M.
A. A sensitive approach is adopted recognising that she is likely to be anxious.She is explained about the diagnosis -that there is a incomplete fusion of backbone(s) which could vary from a skin dimple to possible exposure of spinal cord.She is explained that further evaluation by a fetal medicine specialist is required to identify the nature of the defect and presence of other associated anomalies.She is told that syndromic abnormalities like Meckel-Gruber syndrome have poor prognosis and 25% recurrence risk.She is counselled that the prognosis depends upon the level and extent of lesion,presence of neural tissue in the sac and presence of hydrocephalus.Amniocentesis is offered for karyotyping.She is told that it would be difficult to predict the prognosis antenatally and the baby could have varying degrees of lower limb weakness, bowel/bladder incontinence and intellectual impairment.Her options for further management would include pregnancy termination.If she opts for continuation of pregnancy, she would be evaluated by a team of neurologist,paediatric neurosurgeon, neonatologist and obstetrician.Serial ultrasound scans would be required for monitoring growth,liquour volume and ventriculomegaly.She is told that development of hydrocephalus may necessitate intrauterine procedures like ventriculo-peritoneal shunting.She is counselled that role of intrauterine surgery in reducing morbidity is unclear and may be associated with serious complications like pulmonary hypoplasia.Written information and support group details are provided.
B.A sympathetic approach is adopted.Her individual, cultural and religious beliefs regarding postmortem examination is sensitively explored.The woman is counselled about a conventional postmortem examination of the baby as it could detect abnormalities which could not be identified on ultrasound scan and this could have an impact on future pregnancy management.She is explained that her baby would be treated with dignity.The procedure description and the likely appearance of the baby postprocedure is explained.If a conventional postmortem is unacceptable to her ,less invasive methods like trans cutaneous tissue biopsy,body cavity aspiration for examination and placental biopsy can be considered.The other option would include imaging like MRI .She is told that an examination would be carried out only after a witten consent is given.Consent would also be required for any invasive procedure or biopsy on the baby.Written information is provided.She is offered the option of leaving a message or a toy with the baby during separation.The likely time of result availability and plan for follow up is discussed.It is ensured that her wishes are respected and there is no persuasion at any stage.
Posted by Penelope T.
a) This lady should be counselled in a quiet private room with empathy and sympathy. Ideally her partner or supportive family member should be present. She should be given opportunity to express her emotions and ask questions. Points to clarify with her include any previous affected pregnancies, diet, and medical conditions predisposing to folate deficiency (eg. coeliac disease, Crohns etc). Spina bifida should be explained- that this is a developmental condition entailing incomplete fusion of the vertebral column with variable exposure of the membranes surrounding the spinal cord or cord itself. Severity of the resultant disability can vary from none, to severe (including paralysis below the level of the lesion, incontinence of bowel and bladder). She should be counselled of the associations of folate deficiency and chromosomal abnormality, and offered amniocentesis and karyotype. A tertiary ultrasound in a maternofetal medicine unit should be encouraged to clarify the extent her fetus is affected (looking at the level and nature of the lesion, associated other anomalies, bladder volume, lower limb tone and movements, and liquor volume). This will give information to further aid in counselling and decision making. In addition she should be seen by a neonatologist and paediatric neurosurgeon.
She should be advised that one option will be to continue with the pregnancy. In this case she will require growth ultrasounds at 28, 32, and 36 weeks. She should be able to deliver vaginally unless other obstetric concerns arise.A second option is to terminate the pregnancy. At twenty weeks gestation this would be performed by inducing a labour.
She should be offered a further appointment in the near future and time to consider and discuss with her partner/family. Either way emphasis should be made on supporting her decision. Support groups numbers and written information should also be offered. She should be advised of a recurrence risk of 4-7% for next pregnancy and need for high dose folate (5mg) in this event.
b) It would be important to ensure privacy and quiet. I would express sympathy for her bereavement and check if she was agreeable to discussion at the present time. I would ensure a support person was present for her. The importance of clarifying any underlying syndrome or cause for her fetal demise should be explained, hence the recommendation for post mortem. It should be emphasised that postmortem is not compulsory, but is encouraged under hospital policy. Emphasis should be laid that this is the patient (and partner)\'s decision, and that limits can be placed on the extent of examination. This can entail external examination only; a limited postmortem (eg. excluding brain); or full postmortem. More information may be gained from a fuller examination however it is possible that no abnormality might be found. The patient should also be made aware that is abnormalities were found tissue samples might need to be taken for analysis (which can take up to 6 weeks), and some of this may be retained by the hospital. Any tissue and body parts following post mortem would be disposed of according to her wishes.
In discussion of post mortem, the patient should also be offered a possible alternative of skeletal survey and fetal MRI.
Posted by H H.
HHH
A sensitive approach in breaking bad news is adopted. She is told that her fetus has an anomaly in his/her spine where the bony part of the vertebral column on back of fetus has not covered the spinal cord and its membranes. After giving the woman some time, will take history regarding a previous similar condition in a previous pregnancy,or a family history of it. Will ask of her intake of folic acid in this pregnancy. Will discuss with her the implication of spina bifida, weaknss in lower limbs,inability to walk, sphincter abnormalitis(anal and urinary), and intellect can be affected. Severity of condition increase as the level of defect is highier. Will tell her that more information will be known by discusion with neonatologist,neurologist and neurosurgeon in a multidisciplinary manner to discuss prognosis and surgical treatment options. Amniocentesis will allow karyotyping and detect associated chromosomal abnormalities some of which are lethal .Will dicuss risks of amniocentesis( miscarriage 1%,infection 0.1%,bloody tap, culture failure), result in 2-3 days by FISH and full karyotype in 2-3 weeks.
Will see her attitude regarding her pregnancy wether to terminate or continue. Should she want to terminate will discuss with her the methods ,usually done by mifprestone tablets aond prostaglandine suppository after fetocide , and tell her that she will expect to have pain and dicomfort. Surgical termination at such gestation can be done at some centers. Will give her written information regarding these methods .
If patient opt to continue, usuall antenatal care is done. There is risk of intrauterine growth retardation and polyhydramnios.Will tell she will expect a vaginal delivery in presense of neonatologist and well equibed NICU . C/S for obstetric indications.
Patient told that for isolated neural tube defect(NTD) ,the recurrence risk is 2-5%, but if it is part of chromosomal defect ,will need genetic counselling.
She is told that her baby will need some surgical correction procedure and will discuss it with neuro surgeon. She is given written information regarding NTD and it lines of treatment. She given adresses of support groups.


Patient is in much anxiety and emotional distress ,every effort is made to make her comfortable. The support of partner is important. Will always tell her it is not her fault and was not done by an act of commission or ommision by her. She is told that it is important to know wether this NTD was isolated(only it present) or part of a chromosomal syndrome in order to give her reccurence risk of such an anomaly. The difference can be known by post mortem examination, so if this shows isolated, recurrence risk is 2-5% and if part of chromosomal anomally will need genetic counselling. Post mortum can also tell the cause of death ,and if this is due to placental insufficiency, further maternal tests will be needed for cause and considering patient is healthy ,most probably woud be idiopathic.
If patient decline a post mortum,permission is taken to take photographs for future memoirs, foot prints and radiological images using Xray and MRI to detect any internal abnormality. Swabs taken from placenta for bacteriological examination. If it is a fresh stillbirth samples can be taken for karyotyping. Patient given written information regarding post mortum eamination.
Posted by Bee N.
A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks] (b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]


(bee)
A) I will approach sensitively and sympathetically. I will arrange for the discussion in a private room preferrably with her partner of family member with a midwife present if possible. I will tell her an abnormality was found on anomaly scan and how much she wishes to know if at all about the scan. I will inform her that she will be referred to a fetal medicine specialist with whom we willhave joint management with peadiatricians . Repeat scan(for confirmation) and further discussions about mangement will be by the fetal medicine specialist. Counselling will depend on how much she wants to know. I will explain that Spina bifida is an abnormality of the baby\'s spine with a defect present around the bones and tissues covering the spine. I will explain that it can happen sporadically but has been associated with folic acid deficiency. I will tell her that the disability caused depends on the level and lenght of defect. I will inform that defect would range from death in utero to absent neurological deficit after birth. Neurological deficit when present could include limb paralysis and urine/fecal incontinence.
I will inform her that she would require further scans especially to further access the defect and to delineat brain invovlment when present (hydrocephalus). I will inform her that vaginal delivery is possible and ceasarean section may be needed for obstetrics reasons or in the presence of severe hydrocephalus.
I will informher that termination of pregnancy is an option for her if she so wishes. Her wishes must be respected at all times. I will ensureproper documentation of discussions and give her information leaflets forfurther information. I will advice high dose folic acid of 5mg/day preconceptually in next pregnancy. Psychologist referral will be considered if she would find it difficult to cope with this new findings emotionally.


B) I will appraoach sensitively and sympathetically. I will arrange for discussion preferably in the presence of her partner in a private area.
I will tellher that though spina bifida may be the cause of death,only a postmortem can confirm that as othercauses are still possible. I will explain that without a post mortem we can only assume the cause of death to be related to spina bifida. I will explain that post mortem however may not reveal the cause of death and may entail taking tissuesororgans fromthe baby for examination. I will will explain the different types of post mortem which include 1) limited 2)Full. Limited post mortem varies from taking simple photographs and x rays without taking tissues or organs to taking small samples of tissues as consented for by the patient as well as well as taking fluids for examination.
Full post mortem may include the above but may also involve taking whole organs for examination. This organs will be replaced into the body. I will explain explain that disposal/burying of the baby can be organised by the hospital or the patient depending on her choice. i will explain that consent will be taken before anything is done with the baby. I will explain that she will be informed of all findings if any and follow appointments arranged should she wish to have any further discussions partaining to her baby\'s death. I will offer her cabergoline to suppress lactation. Alldiscussions willbe documented.
Posted by I M.
The patient will be seen with her partner and relative if possible ,with adequate time allocated for consultation to in form her about the diagnosis ,information about the anomaly and answering her questions. She will b told spina bifida means a defect in the development of the spine and nervous tissue. Various degrees of severity of disease exist and if the defect in the spinal column is small hole or only membranes surrounding the brain tissue herniated through the defect the baby doesn’t have any long term health problems. In cases very there is big hole in the back bones of the baby usually neural tissue herniated through it causing infection of the brain and damage the neural tissue. This type is associated with brain anomalies many a times ,called Arnold chiari malformations and 70% of babies develop accumulation of fluid in the brain which further causes brain dmage.baby may have paralysis of lower limbs, inability to control bladder and bowel. Most children have low IQ than average by 20 points ,lack of concentration , difficult in reading and problem solving. But this all depends on the level and length of defect in the spine and associated brain defect.
The defect in spine is repaired by surgery within 48 hours after birth but the damage to brain and spinal cord is irreversible. And a shunt is usually put to drain fluid from the brain to abdomen so that pressure on nervous tissue can b released.
She will b informed that with treatment approximately 85%of kids survive to adulthood. And can lead independent and fulfilling life.
Patient will be offered termination of pregnancy in cases of myelomeningocoele and arranged if she decides to terminate. If she chooses to continue pregnancy she will have multidisciplinary management and she will be introduced to care team which will help take care of her baby. She will be informed that she will be having frequent antenatal visits every fortnight ,monthly ultrasound to check for hydrocephalous and foetal growth. She will best be delivered byat foetal medicine centre where facilities for post delivery surgery r available and by caesarean because of hydrocephalous and to avoid damage to neural tissue in the sac behind the back. The babies who have only spin bifida occulta or meningocoele can safely deliver vaginally.
Her risk of having another baby is around 3-8% which can b reduced to 1% if she will take folic acid at the dose of 5 mg per day preconceptionally.she will be given information leaflet about the disease and informed about the support group eg ASBAH.


B.
EVEN in case of obvious cause of death postmortem changes it by 12% and new information is gained in further 26%.she will be told that postmortem will be carried out by a perinatal pathologist .it may require taking the baby to another hospital.the baby will b returned once the examination is complete.baby will be treated with dignity all the time.postmortem will involve incisions on the abdomen chest and scalp ,organs are examined then returned back to body,incisions closed.no incisions will beon arms legs or face.if it is not possible to close the incisions baby will be wrapped and once dressed appearance will be same as before exam.the organs r photographed weighed and macroscopically checked and samle r taken for tissue slides.the brain requires fixing before exmination so it may take long time before baby’s body will become available for funeral and burial.so they may choose brain not b examined or brain can b kept by pathologist or burial without brain.the post mortem report will be available in about 3-4 weeks time.it will be discussed with them and copy of report will be given.
If they decline post mortem then they will be offered foetal imaging with skeletal x ray and MRI AND HISTOLOGICAL EXAMINATION Of placenta.
Posted by millionaire2004 A.
A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks]

Recognize that this is associated with significant maternal distress. Approach her sensitively. Counsel in the presence of her partner, if possible, to provide emotional support. Counselling should be done in an appropriate place where privacy can be ensured. Counselling team should be a multidisciplinary team comprising of obstetrician,neonatologist ,paediatric surgeon and midwife. I will explain to her that spina bifida means incomplete development of spinal cord and its coverings. I will tell her that is can be caused by maternal deficiency of folate. However, i will reassure her that nothing that she has done that caused this and it can even occur in a women with adequate folate level. I will counsel her regarding implication to her baby, depending on severity,type and level of spina bifida. It can cause mild neurological sequalae in spina bifida occulta to lower limb paralysis in myelomeningocoele. I will tell her regarding surgical correction after birth. I would counsel her regarding her options which are termination of pregnancy or continuation of pregnancy . Her wishes will be respected. I she choose termination of pregnancy, i will counsel her for medical method (prostaglandin). I will counsel her regarding risk of recurrence and prepregnancy folate supplementation (5mg/day) at least 1 month prior to conception throughout 1st trimester to reduce risk of recurrence. The counselling and decisions made will be documented in case note. I will provide her written information and contact number of support groups or web-based support groups. I will arrange follow meeting.


(b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]

Recognize that this is an acutely distressing event in her life. Counsel her sensitively and in the presence of her partner or other family to offer emotional support. Tell her the benefit of post mortem which are confirming clinical diagnosis, identifying internal/external structural anomaly, giving possible time of death and may reveal cause of death. It will be done by a trained perinatal pathologist. The baby needs to be transported to the place of post-mortem. It involve making skin incision on the scalp,chest and abdomen. Organs will be removed, examined,small tissue samples taken for histopathological examinations and returned to the baby at the end of examinations. However, certain organs such as the brain may need fixation and it may take several days. in that circumstances, the mother may decide carry on with funeral without the baby\'s organ or not consent for the organ to be kept. Once post-mortem done, the incision will be sutured, baby will be wrapped and dressed and returned to parents. Counsel her that even after all the investigations, cause of death may still remain unknown. However, i will tell her that even a negative post mortem carries significant information. I would provide her with written information and contact numbers of support groups. I will give her sufficient time to make her decision and give her follow up appointment.
Posted by VINITA N.
A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks] (b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]
VV
Knowing that her baby is having a congenital anomaly can raise considerable amount of distress and guilt in mother and hence she should be counselled in a bleep free, quiet room with her partner or a friend she prefers to accompany. She should first be explained that spina bifida means incomplete closure of spine. It is most of the time idiopathic but rarely can be associated with certain medications like antiepileptic drugs, certain medical conditions like diabetes mellitus and sometimes could be familial.It can also be due to folic acid deficiency or could be a part of a syndrome. She should be given enough time to understand the diagnosis and all her questions should be answered in simple sentences. She should also be referred to a tertiary fetal medicine unit where she would be seen by a specialist obstetricin, geneticist, and specialist midwife. She should also be explained about the prognosis. If spina bifida is isolated with skin covering, it can be rectified by surgery with minimal neurological deficit, if asssociated with other anomalies then the prognosis is usually poor. She should be explained that in the the fetal medicine unit she would have a detailed scan to confirm the diagnosis and also look for any other anomalies. She would be given the option of continuing the pregnancy if she wishes or if she wants termination, her wishes would be respected. if she wishes termination, she would first need to have a foeticide followed by induction of labour. If she wishes to continue her pregnancy, she would need scans every 4 weeksto assess growth, liquor, and dopplers. She should also be given written information and contact number of staff she can contact if further questions. She should be given help and support in making the decision.

B)Patient and partner should be offered condolences and post mortem should be discussed only when she and her partner are ready. She should first be given the form which they can go through. The PM consent should be taken by someone familiar with the form and procedure in the presence of her midwife. She should be explained that the Pm is done to find out a cause for the anomaly and cause of death. It could be of 2 types limited in which only a part of the body examined and complete is were a more detailed examination is performed, which even though takes more time is more thorough as well. The body is handled with outmost respect and is returned to parents as normal as possible for cremation. However if she wishes the hospital can also organise burial/cremation. Sometimes small piece of tissue is retained for further studies and also for research purpose if she consents to it. The results usually take 6-8 weeks and a follow up appointment will be arranged to discuss PM results. She should be advised to commence folic acid 4mg tabletsonce she is planning her next pregnancy. She and her partner should be given enough time PM and all questions should be answered in simple words. She should also be given written information and contact details of bereavement services.
Posted by leelavathi C.
fetal anomaly creats greater anxitiey among parents so dealts with very sensitive way. i will arrange councelling in quiet room with patner or family member. i will explain that anomaly scan detect a neurological abnormality on baby called as spinabifida. i will explain that this is a neural tube defect due to defect in the fusion of vertibral coulmn and neurological tissue exposed out through defect. prognosis mainly depends on level and length of defect,and presence of neural tissue in the sac. it is difficult to assess the damage by other investigation. i will explain that babies could die in utero, if survive might have complications like lowerlimb paralysis, incontinence, and intellectual impairment. i will assess parental attitude towards the fetus as they considered pregnancy termination or wants to contineu pregnancy. if they wish to terminate i will support her and give her option of medical and surgical termination of pregnancy. if she wish to contineu pregnancy i will respect her decision and i will arrange antenatal clinic appoinments , regular ultrasound appointments. i will discuss the recurrence rate 1-5%. i will arrange consultation with neonatal team to discuss neonatal management. and prognosis. i will provide written information, and information of support groups, telephone contact and further treatment.

B) i will express sympathy, and approach sencitively. iwill explain spinabifida may be the cause of death. i will explain to confirmation and to detect other anomalies require post mortem examination. i will explain parents regarding consent form and their rights to grant or withhold consent. i will discuss with pathologist before taking consent to find out the need for tissue retention. i will explain them consent form needs to be signed before the proceding to post martem examination. i will give time to decide. i will provide information leaflets. i will arrange further appoinments to discuss about post mortem results, and any further information she needs.
Posted by nazia M.
a)Explain diagnosis to the patient sensitively ideally her partner or family member should be present with her. explain implications and prognosis depends on level ,lengthof defect and neural tissues present in sac.Fetus may be iud or if not there are abnormalities like lower limb paralysis,incontinence and intellectual impairment.She should be told about other structural abnormalities may be present with it so she should be offered detailed ultrasound scan at a tertiary level or in fetal medicine unit If other abnormalities are present it may point to a syndrome and it may be necessary to refer the patient to a clinical genetist for appropriate counselling.When there is increased risk of aneupolidy offer karyotyping by CVS or amniocentesis, risk of miscarriage associated with it should be discussed.If karyotyping abnormal or multiple structural abnormalities found then termination of pregnancy would be discussed.Conditions such as diabetes,epilepsy and its drug treatment and other teratogenic drugs which might be implicated should be identified and discussed indetail.
b)Patient and partner should be counselled in sensitive and empathetic manner.Patient should be told that postmortem examination is vital importance in establishing actual cause of condition in the management of subsequent pregnancy..If they wishes to hold baby it will be encourged.Discuss details of postmortem examination and other investigation including fetal tissues or organs removal.They should also be provided written information explaining purpose of postmortem examination.Consent of postmortem examination should be taken.If deny consideration should be given to x-ray and MRI.Make arrange ment for registration and funeral.provide bereavemant counselling/support group.Arrange postnatal follow up to discuss result of postmortem and devise plan for subsequent pregnancy and advice for folic acid 5mg.If syndrome diagnosed then refer to clinical genetist for counselling about recurrence risk.
Posted by A- N.
I would approach her sensitively and with empathy, as she will be very upset and distressed. I will ask her if she wants her partner to be present during counselling.I will explain her that there is defect in spinal cord of baby on back bone. I will inform her such babies servive in 70% of cases. This will depend on type of defect and assosciated anomalies. She should be counselled by multidisciplinary team involving neonatologist, paediatric surgeon, fetal medicine specialist.she needs to be reffered to tertiary centre for optimal care. she may need further scan torule out other structural anomalies or typical syndromes. She needs detailed fetal cardiac echo to rule out abnormalities.I will discus the options available to her with multidisciplinary input and pher wishes.
iwill offer her termination of pregnancy if there are other congenital anbormalities are present , as multiple defects have poor prognosis. If she wnts to continue pregnancy, her care will be in tertiary centre.
I will offer amniocenesis to rule out chromosomal abnormalitis. Inform her that she needsserial grouth scans to check fetal growth and liqour volume , as polyhydromnios is common in this condition, hydrocephlous should also be checked.psychological support is given throught the pregnancy.Iwil explain her that risks of preterm and preterm rupture of membrane is common. I will arrange for discussion with paediadriac neurologist for any further discussion.
If she wants termination , her wishes must be respected.

b. I will offer her postmortem examination, as this will help in exploring cause of Stillbirth and may help to find chromossomal abnormalities.This will be helpfull in further planning of next pregnancy.
Iwill discuss about procedure in detail. This will be done by perinatal pathologist. the procedure involves sampling of different organs for examination and replacing them back into body in their respective places. Cut on body will not involve face and they are closed after testing and body will be no different than how it was before. Baby will be respected with dignity. Discussion should be in sensitive approach.if she doesnot want complete postmortem examination then partial postmortem examination is offered . In this placenta is examined, fetal skin and hair examined for karyotyping, body xray or MRI is done. Iwill also expain her that negative postmortem examination will be reassuring. Consent form will be filled and patients should consent before we goahaead with procedure.




Posted by Arun D.
answer.. arun de

A) I will explain her the actual meaning of the diagnosis, will tell that that there is an opening in the backbone of the baby. I will tell her that it is open or closed and will alos tell her that at which level it is situated. I will tell her that we have to search for any other cranial anomalies , like swelling up of the brain is to be looked for. I will also emphasize for the need to look for any other associated anomalies are present or not in cases of open spina bifida. She needs to be referred to a tertiary referral center for confirmation of the diagnosis by experienced radiographer and needs referral to fetal medicine specialist. She will also be told that prognosis for spina bifida is difficult to predict early
and depends on level and extent of lesion. She will be informed that baby might be incontinent, paraplegic and so on , depending on the part of spinal cord involved. She should be advised for karyotype in all cases. She should be monitored for hydrocephalus. She should also be stressed that management of such a baby needs interdisciplinary management including a fetal medicine specialist, pediatric neurologist, neonatologist and neurosurgeons. She might be offered termination of pregnancy. Proper leaflets including all the written information should be provided. If she wishes to continue the pregnancy, we need to monitor ongoing pregnancies (growth, umbilical artery Doppler recordings, amniotic fluid volume) because of chances of IUGR,oligohydramnios and premature delivery. Fetal surgery for spina bifida should be regarded as experimental at present. She should be told that optimal route of delivery is unknown for spina bifida. Great care is needed with delivery of the back, regardless of delivery route.


B) The woman should be handed sympathetically and discussion should preferably take place in presence of both the partners. A written informed consent from the mother is required for the procedure. I should acknowledge that discussions about autopsy are extremely distressful in this situation and refusal for same is her right in case of personal objections. She should be informed that autopsy can confirm the clinical diagnosis, reveal the cause of death and can also tell about presence of any other anomaly in that baby. It may be difficult to comment about risk of recurrence without knowing the complete structural problem of that baby.even a negative autopsy report is of significance. If parents decline perinatal autopsy, should be offered limited autopsy including external examination tissue needle biopsy, x-ray, body cavity aspiration,it must be stressed that these techniques remain inferior alternatives to full post-mortem with histpathology.information leaflet should be provided to the parents explaining the purpose of an autopsy, benefits of tissue and organ retention rights of parents to grant or withhold their agreement.
Posted by L S.
LS:
(a) How would you counsel her? [10 marks]
I would first explain the condition sensitively to her with her partner present that it is failure or incomplete closure of the neural tube and some vertebrae overlying the spinal cord remain unfused and open allowing a portion of the spinal cord to protrude through the opening in the bones. She may refuse to accept the situation and help of an experience counselor is usually required. The condition maybe associated with chromosomal abnormalities and she should be counselled for invasive diagnostic testing (amniocentesis) and the implications of such techniques explained. She should be informed that the level of lesion has different prognosis. Prognosis is also dependent on presence of other congenital anomalies and the results of karyotype. She should be offered an opportunity to discuss prognosis with a neurosurgeon. The option and method of termination should be explained. If she chooses to continue with pregnancy the baby will require close follow up. Both parents would benefit from contacting a parent support group such as ASBAH (Association for Spina Bifida and Hydrocephalus). She should be informed that the risk of recurrence in subsequent pregnancy is low.

(b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]
The woman should be handled sympathetically and discussions should preferably take place with both parents together. Discussion for a post mortem can be acutely distressing following bereavement. She should be informed that autopsy may confirm clinical diagnosis, reveal the cause of death, and identify other causes like infection. It may provide information that can guide counselling about future pregnancies. If she declines an autopsy she should be offered limited autopsy which includes external examination, tissue needle biopsy, body cavity aspiration, imaging, targeted open tissue biopsy and placental biopsy. Specific consent for each component should be taken. It must be stressed that these techniques remain inferior to a full post mortem. If she agrees to a post mortem, she should be informed that her baby’s body needs to be transported to a regional center for a specialist autopsy by a perinatal pathologist. She should be informed on means of transport and when body will be returned. Information leaflet should be provided to the parents explaining the purpose of an autopsy, benefits of tissue and organ retention and rights of parents to grant or withhold their agreement.
Posted by zara A.
A]The mother should be approached sympethetically and involve her partner if she wishes .SHE should be asked about family history and obstetric history ,any previous baby affected.She should be explained about the diagnosis with help of adiagram ,iwilltell her that it is a defect in the back bone of foetus through which part of brain is protruding.She should explained thatshe had nothing to do with itThe implication of this finding is that it could be isolated, or associated with other structural abnormalities or with other structural anamolies.She needto be referred to tertiary care centre for detailed anamoly scanto rule out other structural anamolies.She will told that her pregnancy will be managed by multidisciplinary team involving obstetrician of foetal medicine,neonatologist andpaedriaticneuro surgeon .There is risk of aneuploidy in the foetus so need for further invasive tests amniocentisis and risk of amniocentisis [preterm labour,choriamniotis,culture failure should be discussed .PROGnosis of foetus depends on whether isolated or associated withstructural or chromosomal abnormalities .IF isolated or associated with other anamolies the foetus will have problems like lower limb paralysis,incontinence ,handicapped,and intelligence willbe affected.But antenatally difficult to predict extent of disability.HER views about termination should be disscussed .Her options are continuation of pregnancy or termination .IF she opts for continuation she should be explained consultant led ante natal care ,frequent antenatal v visits .The optimal mode of delivery for spina bifida unclear but chances of csection high.She will be delivered in tertiary centre with back up fascilities of paedriatic surgery.Her meeting with paedriatic surgeon arranged .IF she opts for termination then method of medicaltermintion should be discussed and need to inject kcl in foetal heart ARRANGE post mortum and follow up to discuss and consel about reccurence depends upon whether isolated or syndromic .INVOLve clinicalgenitisct .WHETHER continue pregnancy or termination .she should be offered support .PROVIDE WRITTEN INFORMATION and tell her about support groups. .PLAN OF next pregnancy and need folic acid to be disscussed.B]The discussion about post mortum is disstressing ,both partners seen together .THEy should be explained that post martum examination is examination of baby after death .POSTmortum will be carried out by specialist perinatal pathologist in specialist centre.THEY have to fill special consent formfor autopsy.THE BENeFIT OF post mortum is that it will provide cause of death,confirm the diagnosis,reveal underlying structural anamolies,will provide risk of recurrence in next pregnancy ,even if negative then it is of signifigance. The fullpostmortumexamination includes external examination of foetus ,photograps of foetus.X ray of foetus.SWABS for infection will be taken from baby.skin biopsy will be taken for karyotyping.tissues of foetus will be sent for histopathology and placenta sent for histopathology.The foetus have to give small cut on front and back to remove organ brain and heart.Organs will be kept back in body ,if organ retention needed or tissue used for research the n needed special consent.ALL the time foetus will be treated with respect.postmortum can delay burial ,and if organ retention done then they have to decide whether burial can be carried or they want to wait.IF they refuse full post mortum other option is limited postmortum which includes photographs of foetus,tissue needle biopsy;imaging ,body cavity aspiration,SKIN BIOPSY AND placenta sent for histo pathology.But this technique is inferior to full post mortum.IF PARENTS WANT THEIR MEETing can be arranged with perinatologist who will carry procedure.INFORMATION LEAF LETS PROVIDEd and meeting willbe arranged to dis cuss result of post mortum.
Posted by Aruna R.
Aruna
A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks] (b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]

(a) How would you counsel her?[10 marks]

Fetal anomaly counselling is an sensitive issue and the couple should have sympathetic and supportive care. The woman and her partner should be taken to a quite room. I should leave my bleep with a responsible person, read her notes in detail and take a counsellor or special nurse with me. First I will find out what she knows about her scan and her understanding about it. Then I will explain that her child has a condition called spina bifida, which means defect in development of the spinal cord. This can be an open defect that means no skin covering or closed defect with skin covering. This can occur any part of the spinal cord but usually in the lumbar region. It is not a lethal condition. The baby may have long survival in most of the occasion but with paralysis of lower limbs, urinary incontinence or bowel problems. The defects depend on the level of the lesion. I will give time for them to take the news and make sure if they want to discuss further. I will tell them this could be due to familial cause. I will tell her that she has not done any thing wrong or she would not have done something to prevent it.
I would tell her that she need to be seen by fetal medicine specialist who would scans to reconfirm the diagnosis. The scan is very reliable (90%) in detecting spina bifida. The options available are continuing the pregnancy or termination of pregnancy. If she wishes to continue the pregnancy she should be supported to do so. She will have further growth scans at 26 and 32 weeks. Aim for vaginal delivery and neonatal team support after the delivery. Prepare the parents to face the challenges in bringing up the child. If she wants to terminate the pregnancy ,she will be given mifipristone tablet 200mgs. The feticide done by fetal medicine specialist. 48 hours after the mifipritone she is admitted in a separate room in the ward to give misoprostol every 3 hours total dose of 4 tablets. I will follow the unit protocol for this. She will be given good pain relieve avoiding NSAIDS. She is well supported throughout the process. Once she delivered the baby she is allowed to see the baby if she wants to.

If she wishes to talk about future pregnancy then I will tell her the recurrence rate of spina bifida is 2-5% . She should take 5mgs folic acid tablet 3 months prior and after the conception.

I will make sure that the couple understood what was discussed and give written information. I will let them some time to make a decision. If They want to go home and I will let them and give contact number to contact once they made the decision. I will let her GP and the community midwife know about this. So that they can support her if she needs. I will document the discussion in her notes.
I will also give her the support group addresses and telephone numbers.

Describe how you would counsel her regarding a post-mortem examination [10 marks]

Sensitive issue to deal with .so the couple should be dealt with empathy and adequate support. I will take the bereavement nurse with me during counselling. I will express my condolence and ask them whether they want to know the cause of death. If they say yes then I will tell them that post-mortem examination is the best way to analyse the reason for it. Some occasion it may not be possible to find out the exact reason for death. This can be done in two ways. One is full post mortem and the other one is partial post-mortem.
Full post mortem means that the expert pathologists look in to external appearance, and internal appearance by making a cut in the body and take some samples from the internal organs. They analyse the tissue to find out the possible cause of death. The baby and the tissues taken out of the body are treated with due respect and after the test the cut ends are stitched properly and the baby is dressed given back to you for funeral. Partial post mortem or limited post-mortem means only the suspected organs are exposed by limited cuts and the examination is carried out. Some times we may get the details by this If you wish the hospital to arrange for funeral we could make arrangement for that. Private once can also be arranged if you wish to have.
This test is done as early as possible within 3-5 working days. The results take couple of weeks. We will make 6 weeks appointment in a consultant clinic to discuss the results and to plan for future pregnancy.

After explaining the process I will give time for them to ask questions. I will give written information about post mortem examination. I will ask them to read through the consent form and sign if they wish to. I will document the discussion in her notes. I will write a letter to GP. So that the community midwife can support her.
Posted by Syamala H.
ansA: the diagnosis that the baby has a congenital anomaly can cause of significant distress to parents. an empathetic approach is required while revealing the diagnosis to mother. ask if she needs her partner to be presentduring counselling. explain that this is a form of structural defect in the spinal cord where the bone fails to close over the neural tissue.this can cause sphinter incontinence lower limb weakness and paresis intellectual impairment, long term survival is 90%.prognosis difficult to predict and depends on the level of defect and presence of neural tissue in meningeal sac. it is important to rule out other structural anomaly and hydrocephalus as it may be a part of syndrome(arnold chiari).detailed scan by a fetal medicine specialist is required. she requires to have karyotype done.karyotype by amniocentesis is associatedwith 1%excess risk of fetal loss. she has an option of either termination of pregnancy or to continue with pregnancy and in both cases she will have adequate support for the medical team. will reqiure consultation with pediatric neurosurgical team if she chooses to continue pregnancy. provide written information and adequate time for her to reach to a decision. fetal surgery for spina bifida is still in experimental stage. she needs regular ultrasound monitoring for development of hydrocephalus and monitoring of growth and liqour volume. she should be screened gestational diabetes.risk of recurrence in subsequent pregnancy is 1-5%. will reqire high dose (5 mg) folic acid started preconception as prophylaxis in future pregnancy.
ansB: loss of fetus is very traumatic for the parents. a very sensitive and sympathetic approach is required.a counselor or psycologist in perinatal team can help patient in the grieving process.ascertain if she is willing to talk and sensitively explore her religeous belief regardingpost mortom .explain to the patient that a postmortom examination of the baby will help to confirm the diagnosis and assist while planning for future pregnancy. it maydetect certain features that was not detected by ultrasound.if thespina bifida was a part ofsyndrome like meckel-guber syndrome its risk of recurrence can be as high as25%.although she has the right to refuse examination.ifshe agrees they require to sign the consent form. assure that the baby will be treated with dignity. it can be either limited or complete. limited will have external exam with x-ray or histopath from specific organs and karyotype as per the consent of parents. these might miss certain fact. a complete exam would reqiure biopsy from all organs and placenta.. organs maybe required to be kept but decision will depend on the parents. inform regarding time required before result are available and it will delay the process of funeral. expain the result may not be able to expain the cause of death. funeral arrangements can be made either at hospital or home as per her wishes.arrange for bereavement counselling and give contact numberof spina bifida support group.
Posted by NIRMALA M.
Nirmala
a. The woman should be approached sensitively and sympathetically. It is better to inform the news when she is accompanied by her family members. If she wants to know the scan results even though she is alone, she has be to informed in a separate room slowly that it is a defective closure of the back bone. She should be given adequate time to understand the diagnosis. She has to be counseled by properly trained screening midwife. She should be informed that the baby might have weakness in lower limbs, inability to move the lower limbs, bladder & bowel weakness leading on to incontinence and mental retardation, though it is very difficult to assess the severity at this moment. Any family history of neural tube defects should be explored. She should be arranged to have an appointment with feto-maternal unit for detailed scan for confirmation of the diagnosis and to exclude other associated anomalies like hydrocephalus. Amniocentesis for karyotyping could be offered for any suspected chromosomal abnormalities. She can be offered an appointment with Paediatric neurologist team to discuss above the survival rate and quality of life, any operative procedures needed antenatally like shunting to correct hydrocephalus or postnatal corrective procedures. The options of continuing pregnancy and termination of pregnancy should be offered to her. Her decision should be respected. Her concerns should be addressed and should be explained her that it is not her fault and isolated neural tube defects are not due to chromosomal abnormalities. Information leaflets about spina bifida and support group information should be provided.

b. The woman should be dealt with utmost sympathy. She should be admitted in a separate room and good analgesia should be offered to her. Her beliefs regarding post mortem examination should be explored gently. She should be explained that postmortem examination helps us to find out any other unidentified anomalies which has implications in recurrence in future pregnancies. Patient and her partner should be explained clearly how the postmortem is done, where it will be done and the duration of the procedure. They should be informed that in complete postmortem examination, all organs and body fluids will be taken out, subjected to analysis and some tissues might be retained for future research purposes. Once the examination is complete, all organs would be replaced into the body cavity and neatly sutured back. If the couple does not want a complete procedure, then they could be offered partial or limited postmortem examination like examination of specific organs or tissues. They should be explained that sometimes postmortem examination might not arrive at a conclusive diagnosis other than spina bifida. They should be made aware that the funeral might be delayed due to postmortem. If they agree to postmortem examination, consent form should be signed by the patient. If she does not agree to postmortem examination, her decision should be viewed with respect. They shall be offered to take photographs of the baby, hand and foot prints if they wish before postmortem examination. They are offered funeral services arranged by the hospital chaplaincy services . She should be offered bereavement counseling. A postnatal appointment in 6-8 weeks time has to be arranged in a Consultants clinic to discuss about the postmortem report and to address any concerns. She should be advised to take 5 mgs of folic acid preconceptionally when planning for next pregnancy and effective contraception should be advised till then.
Posted by millionaire2004 A.
soory paul. i re-post my answer as i realised few lines were missing in my initial answer.


A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks]

Recognize that this is associated with significant maternal distress. Approach her sensitively. Counsel in the presence of her partner, if possible, to provide emotional support. Counselling should be done in an appropriate place where privacy can be ensured. Counselling team should be a multidisciplinary team comprising of obstetrician,neonatologist ,paediatric surgeon and midwife. I will explain to her that spina bifida means incomplete development of spinal cord and its coverings. I will tell her that is can be caused by maternal deficiency of folate. However, i will reassure her that nothing that she has done that caused this and it can even occur in a women with adequate folate level. I will counsel her regarding implication to her baby, depending on severity,type and level of spina bifida. It can cause mild neurological sequalae in spina bifida occulta to lower limb paralysis in myelomeningocoele. I will tell her regarding surgical correction after birth. I would counsel her regarding her options which are termination of pregnancy or continuation of pregnancy . Her wishes will be respected. I she choose termination of pregnancy, i will counsel her for medical method (prostaglandin). I will counsel her regarding risk of recurrence and prepregnancy folate supplementation (5mg/day) at least 1 month prior to conception throughout 1st trimester to reduce risk of recurrence. The counselling and decisions made will be documented in case note. I will provide her written information and contact number of support groups or web-based support groups. I will arrange follow up meeting.


(b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]

Recognize that this is an acutely distressing event in her life. Counsel her sensitively and in the presence of her partner or other family to offer emotional support. Tell her the benefit of post mortem which are confirming clinical diagnosis, identifying internal/external structural anomaly, giving possible time of death and may reveal cause of death. It will be done by a trained perinatal pathologist. The baby needs to be transported to the place of post-mortem. It involve making skin incision on the scalp,chest and abdomen. Organs will be removed, examined,small tissue samples taken for histopathological examinations and returned to the baby at the end of examinations. However, certain organs such as the brain may need fixation and it may take several days. in that circumstances, the mother may decide carry on with funeral without the baby\'s organ or not consent for the organ to be kept. In that circumstances, i would counsel her regarding limited post-mortem which involves external examination,limited internal examination focusing on certain systems only and imaging of the baby (ie MRI). Once post-mortem done, the incision will be sutured, baby will be wrapped and dressed and returned to parents. Counsel her that even after all the investigations, cause of death may still remain unknown. However, i will tell her that even a negative post mortem carries significant information. I would tell her that it is her right to refuse post mortem. I would provide her with written information and contact numbers of support groups. I will give her sufficient time to make her decision and give her follow up appointment.
Posted by A A.
AA
A) Fetal abnormality creates a great deal of anxiety among parents. I will approach her sensitively. Will explain her that spina bifida (SB) is a defect in fusion of fetal vertebral column. I will ask her obstetrics history same abnormality in previous pregnancy as there is ~5% recurrence risk. Prognosis dependent on the level and length of defect, Presence of neural tissue & hydrocephlous. Discuss with her the implication of spina bifida in baby difficult to assess anetnatally. It can range from small sac in the back with minimal content to large herniation of spinal cord(menigomyeloceele ) It may be associated with serious problems like weakness in lower limbs ,inability to walk, sphincter abnormalities, and intellectual impairment.
Further evaluation by a fetal medicine specialist is required to confirm diagnosis & identify presence of any other structural anomalies . Offer Amniocentesis for karyotyping as SB may be associated chromosomal abnormalities ( like Trisomy 13)some of which are lethal .There is risk of miscarriage ~ 1% with amniocentesis . Arrange discusion with neonatologist ,and neurosurgeon in a multidisciplinary manner to discuss prognosis and surgical treatment options. Assess patient attitude for termination / continuation of pregnancy. If opted termination I will discuss methods for TOP, usually with tablets after fetocide at this gestation. If patient opt to continue, fetal surveillance with serial ultrasound scans, there is risk of intrauterine growth restriction, polyhydramnios & hydrocephlous .Fyrther discussion regarding antenatal would be arrange as apprapiate. Plan for delivery in tertiary centre with efficient neonatal services. Aim for vaginal delivery C/S for obstetric indications.
Patient told that for isolated neural tube defect , the recurrence risk is 2-5%, but if it is part of chromosomal defect ,will need genetic counseling. Written information , support group details are provided.
B) I will appraoach sensitively and sympathetically. I will arrange for discussion preferably in the presence of her partner in a private area. Explaination that postmortem examination (PME) is the most valuable examination, it may helps us to find out any other unidentified cause which has implications in recurrence in future pregnancies.Appropiate genetic counselling coud be provided.I would explain that there may not be any additional finding. Baby dignity would be respected .Baby’s appearance not much altered after PME . Unit protocol should be explained. Usually not need to keep organs ,samples for histology maybe retained. Time needed to complete PMEwould be explained so funeral can be arrange accordingly. Provide information leaflets & explain that it is their right to grant or refuse the examination. If agreed Consent form should be signed. If refused Full PME ,limited PME or x rays or MRI imaging should be discussed. Appropiate documentation of the discussion should be maintained. A follow up appointment has to be arranged in a Consultants clinic to discuss about the postmortem report and to address any concerns. Recommend pre-conception folic acid (5mg) for subsequent pregnancy
Posted by mobile chandu C.
A) The finding of spina bifida can likely cause considerable maternal anxiety. She should be approached in a sympathetic manner. Counseling should be undertaken preferably in the presence of a family member for psychological support.
She should be explained about the defect in a simple language that it is a developmental birth defect caused by incomplete closure of embryonic neural cord. Some vertebrae overlying the spinal cord are not fully formed and remain open. The various categories of spina bifida are explained to her which can range from small defect to without any functional compromise to presence of brain tissue in the sac
She should be offered a high resolution ultrasound at a tertiary fetal medicine centre to identify other associated structural abnormalities.
The presence of other structural anomalies suggest chromosomal aneuploidy and karyotyping is indicated. Karyotyping is undertaken by amniocentesis which is an invasive procedure carrying a risk of miscarriage of 1%above the background estimated risk at this gestation.
A meeting with neonatologist , peadiatric surgeon and neurosurgeon is arranged to explain the prognosis.
She should be told that prognosis depends upon the extent and level of the defect. More than 90% of infants have long term survival. Spina bifida with associated ventricular abnormalities may lead to learning and neurological impairment. A smaller defect can be corrected surgically with no residual sequelae. Big and complex defects may be associated with lower limb paralysis, incontinence of urine and bowel require extensive surgery .
She should be informed that the recurrence risk would be around 1-5%.in future pregnacies
Her attitude towards the fetus is explored. Her opinion is obtained regarding termination of pregnancy and arrangements should be made accordingly.
If she desires to continue pregnancy , management plan is formed regarding further antenatal care, timing and mode of delivery.
Written leaflets, contact numbers of support groups are provided.
Another appointment date is provided.for follow up.
B)She is likely to distressed emotionally. Her grief should be addressed with empathy.
Her attitude towards post mortem examination is explored sensitively.
She should be told that post mortem examination is procedure of internal examination of the baby and tissue samples are taken to determine the cause of death, and the extent and cause of malformations . This is performed by trained pathologist in an aesthetic manner and after completion of the procedure, there would not be any obvious signs of incisions and closure.
She should be informed that identification of the cause of death may help her grief, and estimation of recurrence risk and management of future pregnancies..
If she declines post mortem examination , she should be offered limited post mortem examination which includes external examination, taking pictures, x-rays, imaging by USG and MRI
Her views and decisions should be respected.
Bereavement counseling should be continued.
In case she agrees for post mortem examination, a nearest possible appointment is given to explain the results of postmortem examination.
Relevant written information, contact numbers of support groups are provided.
Posted by Dr Dyslexia V.
X
a) Counseling should be done preferably by a senior colleague or someone experienced in fetal abnormality counseling. It should be done in a quiet room with privacy and in the presence of her partner of family member. The issue should be handled sensitively and sympathetically. She will be informed that spina bifida is a central nervous system abnormality which involves the protrusion of the content of spine or part of the content through the veterbrae. The incidence is about 1:1000. She should be informed that the prognosis depends on the extent of content and protrusion and its distance caudally. It is also associated with aneuploidy and amniocentesis could be offered as to its association with trisomy 13,18 and 21. She should be allowed for a second opinion or referral to a fetomaternal centre if requested. She should be delicately informed in regards to option of termination after all the other investigations done such as amniocentesis results. If she wishes to continue with the pregnancy, a clear pregnancy plan msut be planned and written out after consulting the neonatologist and surgeons. Risk of recurrence in next pregnancy is informed to be only about 5%. She should be referred to support group such as ASBAH for further help and information. She should be adviced to commence on folic acid 5mg prior to her next pregnancy.
b) I will approach her with a sympathetic and sensitive manner. I will do so by respecting her individual beliefs, religion and culture. I will explain the post mortem explanation is a integral part of the management which she has an option to choose. She will benefit by knowing the cause of death, presence of any additional anomaly which could not be detected via ultrasound. This is so she could predict the chance of recurrence and the need for screening in subsequent pregnancy. She should be informed that a full post mortem involves surgical incision to the fetus to examine the internal organs and specimen collection. This also could include taking of photographs and imaging of the fetus. Bodily fluids and biopsy could be taken for further evaluation training, research with patient’s consent. She should also agree to only partial post mortem in which she could dictate the extent of procedure such as not wanting any incision on the fetus but agreeing for skin biopsy, cultures, x-ray’s and karyotyping. She should understand that it could be of limited value. She should be informed that sometimes not additional information could be obtained from the post mortem. She should also have the right to consent in regards to the retainment of the tissue obtained in the fetus if could be used for further evaluation, research or to be disposed of. She has the option of arranging her own burial proceedings or have the hospital dispose the tissues with dignity usually by cremation. I will document all her queries and explanation in length and would have documented it in her notes. I will arrange a 6 weeks follow up with the post mortem reports to address her questions and queries in the follow up. I will also arrange a bereavement counseling session prior to the follow up.
Posted by Bobey B.
The situation is likely to be associated with maternal anxiety and distress. So, the importance of sensitive approach must be emphasized. Appropriate counseling and proper explanation to the woman should be in simple language. The anomaly scan at 20 weeks gestation, neural tube defects has the highest detection rate of the structural abnormalities, with spina bifida being 92-95%.
The importance of multidisciplinary counseling involving neonatologist and pediatric surgeon is vital. Family history of neural tube defects should be asked, as the recurrence risk in absence of family history is 1 / 1000. The potential functional ability of the child must be explained to the woman in sympathetic manner. The outcome may be good with some cases of spina bifida and > 90 % long term survival, but generally lower extremity paralysis, incontinence and intelligence may be affected.
The karyotype is recommended in open neural tube defects. Referral for genetic counseling, if there was chromosomal anomaly or syndrome in previous pregnancy.
Amniocentesis is not recommended as ultrasound scanning serves as screening and diagnostic test.
The woman should be explained that the nature of the defect of spina bifida may range after delivery from occulta with hairy patch / dimple to a meningocele. Ultrasound scanning detects skin covered defects and sensitivity is equipment and operator dependent .
The prognosis and the consequences on the baby will depend on the level as well as the extent of the defect. So, the woman attitude to the affected fetus should be determined .
TOP may be offered according to the woman\'s wishes and the method of termination should be discussed and documented. If she wishes to continue with pregnancy, antenatal intrapartum care and place and mode of delivery should be discussed.
She should be informed that recurrence risk 2-5% if sporadic . She should be offered pre-conception folic acid supplementation ( 5 mg ) for 12 weeks and during the first trimester for subsequent pregnancy.
Details of support groups must be provided such ( IFSBH) International Federation for Spina Bifida and Hydrocephalus, and European Folic Acid Newsupdate, . Written information leaflet should be provided.
b) Prior to counseling, the woman should be cared by midwife with tender love care and dealing with emotional upset and greif. She should be counseled in empathy and sympathetic manner for the postmortem examination and offered an appropriate written consent . She should preferably be informed in presence of her partner that identification of underlying cause may help with future pregnancy.The counselling \'s target that the woman and her partner are provided with better information about the postmortem examination. The consent process requires that postmortem is fully explained , including all options regarding tissue and organ retention. She must be informed that hospital authorities would provide an information leaflet for the parents ,explaining the purpose of the postmortem and their right to grant or withhold consent. A copy of the consent form signed by them should be available for them to keep , as well as any information received. She should be informed that methods of the examination should meet with public expectation, be respectful , safe and lawful. Appropriate postnatal support including follow-up and telephone contact numbers with leaflet information should be provided.
Posted by Bobey B.
The situation is likely to be associated with maternal anxiety and distress. So, the importance of sensitive approach must be emphasized. Appropriate counseling and proper explanation to the woman should be in simple language. The anomaly scan at 20 weeks gestation, neural tube defects has the highest detection rate of the structural abnormalities, with spina bifida being 92-95%.
The importance of multidisciplinary counseling involving neonatologist and pediatric surgeon is vital. Family history of neural tube defects should be asked, as the recurrence risk in absence of family history is 1 / 1000. The potential functional ability of the child must be explained to the woman in sympathetic manner. The outcome may be good with some cases of spina bifida and > 90 % long term survival, but generally lower extremity paralysis, incontinence and intelligence may be affected.
The karyotype is recommended in open neural tube defects. Referral for genetic counseling, if there was chromosomal anomaly or syndrome in previous pregnancy.
Amniocentesis is not recommended as ultrasound scanning serves as screening and diagnostic test.
The woman should be explained that the nature of the defect of spina bifida may range after delivery from occulta with hairy patch / dimple to a meningocele. Ultrasound scanning detects skin covered defects and sensitivity is equipment and operator dependent .
The prognosis and the consequences on the baby will depend on the level as well as the extent of the defect. So, the woman attitude to the affected fetus should be determined .
TOP may be offered according to the woman\'s wishes and the method of termination should be discussed and documented. If she wishes to continue with pregnancy, antenatal intrapartum care and place and mode of delivery should be discussed.
She should be informed that recurrence risk 2-5% if sporadic . She should be offered pre-conception folic acid supplementation ( 5 mg ) for 12 weeks and during the first trimester for subsequent pregnancy.
Details of support groups must be provided such ( IFSBH) International Federation for Spina Bifida and Hydrocephalus, and European Folic Acid Newsupdate, . Written information leaflet should be provided.
b) Prior to counseling, the woman should be cared by midwife with tender love care and dealing with emotional upset and greif. She should be counseled in empathy and sympathetic manner for the postmortem examination and offered an appropriate written consent . She should preferably be informed in presence of her partner that identification of underlying cause may help with future pregnancy.The counselling \'s target that the woman and her partner are provided with better information about the postmortem examination. The consent process requires that postmortem is fully explained , including all options regarding tissue and organ retention. She must be informed that hospital authorities would provide an information leaflet for the parents ,explaining the purpose of the postmortem and their right to grant or withhold consent. A copy of the consent form signed by them should be available for them to keep , as well as any information received. She should be informed that methods of the examination should meet with public expectation, be respectful , safe and lawful. Appropriate postnatal support including follow-up and telephone contact numbers with leaflet information should be provided.
Posted by Ir A.
A healthy 27 year old woman attends for her anomaly scan at 20 weeks gestation. The fetus is found to have spina bifida. (a) How would you counsel her?[10 marks] (b) She presents at 28 weeks gestation with reduced fetal movement and intra-uterine death is confirmed. Labour is induced with a vaginal delivery. Describe how you would counsel her regarding a post-mortem examination [10 marks]

The breaking of this bad news to the mother is bound to cause distress and hence must be dealt with sensitively and empathically. She should preferably be counselled along with her partner or some family member in a quiet room in an unhurried manner. She should be told that the baby has a defect in the spinal cord wherein the vertebra have not closed completely exposing the cord. She should be reassured that it is not because of her fault that the baby has this problem. She should be told that the there is an increased risk of associated anomalies, polyhydramnios, preterm labour and spontaneous intrauterine death in this pregnancy. The neonate is at risk of varying degree of neurological handicap depending on the degree of spina bifida. The abnormality can range from paraparesis, paraplegia to bladder bowel incontinence. Spina bifida can be corrected surgically postnatally; however the degree of future handicap cannot be predicted with certainty. She should be given written information and contact numbers, website addresses of support groups. She should be referred to maternal fetal specialist for a detailed fetal anomaly scan. She should be offered amniocentesis for determining karyotype. Depending on the degree of spina bifida and associated findings, termination of pregnancy may also be an option. However, the couple\'s wishes are foremost in this regard. At a later date, the risk of recurrence and preconceptional foilc acid should be discussed.

b) The couple should be counselled according to the hospital protocol on postmortem. Usually a trained bereavement counselling officer or a trained nurse should help in making the couple come to terms with their loss and arrive at a decision. The couple should be counselled that the postmortem of the baby may yield insight into the cause of death. They should be explained that an experienced person along writh a pathologist will perform the autopsy. They should be infomed that parts of tissue may be retained after the postmortem. They should be provided with written information and told about their rights to refuse any part or whole of the procedure. An informed consent should be obtained and a copy should be given to the parents. Any tissue retained after the baby\'s burial should be disposed off respectfully and according to hospital guidelines.
Posted by Ida I.
I

A) Counselling has to be done in a quiet room, by the most qualified and experienced person, and with her partner present. Approach on the matter has to be with empathy and dealt with the utmost sensitivity. She should be explained that the condition is caused by the protrusion of the spinal cord through a defect in the bone and skin. Also explain that it is difficult to predict the baby\'s outcome as the severity of the condition depends on the level and the size of the defect. She should be informed that the condition is rare, with an incidence rate of 1:1000, and there is a small likelihood of the condition recurring in her next pregnancy, which carries a recurrence rate of 5%. She should be informed that there is 90% survival rate, however it may be complicated by paralysis and incontinence. She should be advised to take folic acid 5mg/day in her next pregnancy to reduce the risk of recurrence. Amniocentesis and karyotyping should be offered as the condition is associated with other chromosomal abnormalities, like Trisomy 13, 15 and 18. Options on continuation of her pregnancy or termination of pregnancy can be given, and her decision respected. If she opts to continue her pregnancy, she should be referred to a tertiery fetal maternal centre, under the care of of a consultant fetal maternal specialist, neonatologist, paediatric surgeon and geneticist. She would be followed up with serial ultrasound scans to look for liquor volume and hydrocephalus. Patient information leaflets on spina bifida should be made available. She can also be referred to support groups, such as ASBAH.

B) The matter should be approached sensitively. She should be explained the benefits of the postmortem, that it may reveal the cause of death and may show other conditions or diseases that may be present. The results of the postmortem may also help her in planning her future pregnancy. However, she should also be informed that despite the postmortem, the cause of death may be not confirmed or unknown. She has to be assured that the body will be treated with the utmost respect, and that the procedure will be done by a consultant paediatric pathologist, someone who specialises in autopsy of newborns. She has to be informed that an incision will be made on the baby\'s abdomen, chest and scalp. The organs will be removed for tissue samples and will be returned to the baby once the procedure is completed. If she is not comfortable with having her baby \'desecrated\', limited postmortem can be offered. Tissue samples from the main organs are taken with needle biopsy, while blood samples and skin biopsies are taken for chromosomal studies. A full radiograph of the baby, or babygram can be taken to assess for any skeletal defects. Tissue from placenta should also be taken to complete the examination. Any final decisions or requests made by the patient should be respected and adhered to.
Posted by Mohamed D.
Mohamed
The anomaly should be explained to her with sensitive approach. Time should be given to her to absorb the shock and understand the condition with respect to her reactions. She should be asked is she would like her partner or a family member to be present with her during this discussion. A second openion should be seeked from fetal medicine specialist if available. A tertiary referral should be arranged with her consent for confirmation of such anomaly. Written information about the condition should be provided and support groups with parents who had siblings with the same condition to share experience and understand the problem. A discussion with neurosurgeon should be offered at a later appointement to discuss about future management after delivery and follow up with risks of disability. Her attitude towards the pregnancy should be respected and if she opt for termination, information should be provided about that. The possibility of other anomalies and further tests should be discussed as amniocentesis for fetal chromosomal anomalies. If she decided to continue with the pregnancy; ultrasound scans for fetal growth should be arranged.

She should be offered time with the baby clothed and kept in cot and chaplain or religous body to bless her baby, if she wants that. Experienced obstetrician in consent for postmortum examination should councell her about that with sensitive approach. Information leaflet should be provided. The process of exmination should be accurately explained to her, and she should be informed that no cuts will be done in the face and the baby will look normal when clothed before the funnerral. Photoes, x-rays and MRIs still can be done if she doesnot want the examination. Placental swabs, placental wedge and skin biopsy for chromosomes still to be sent for examination with her consent. A consent should be signed prior to examination and details should include full examination or limit it to specific organs only, slides to be used for education and parts to be kept for future reseach. Return of the organs or parts to the body after examination should be discussed as it will delay the funnerrel. She should be advised that finiding a reason will help in management of any future pregnancy and a negative examination is reassuring that the IUD is unlikely to be recurrent. Time should be given for answering any querries and give her the needed time to decide about the examination. Results will be discussed in the clinic at a later consultant appointment. Her decision should be respected and a follow up appointement with the consultant should be arranged later on.
Posted by Bgk H.
bgk

a. I will approach her in sensitive manner with the presence of her partner and alongside with a midwife. I will explain to her regarding the finding of spina bifida which involves incomplete closure of the neural tube during the fetal development. I will explain that it is ranging from anencephaly to a small tuft of hair at the back along the spine. The outcome of the fetus will also range from severe musculoskeletal disability and can be occult without any symptoms.

I will inform her that there is not associated with what she did or did not do to cause it. I will inform her that majority of the affected baby will be compatible to life. In severe cases termination of pregnancy can be offered. But if she wishes to continue with her pregnancy, serial scan should be done to assess the fetal growth and extend of the disease. It is also associated with increased risk of intrauterine death.

I will give her the opportunity to meet the neonatologist to discuss the prognosis and further management following delivery. I will explain to her the recurrence risk of getting the same problem in future pregnancy will be higher than the normal populations. I will advise her to take high dose folic acid at least 3 months prior to her next pregnancy. A written patient information sheet should be given. Support group and contact number for any queries should be given.

b. I will sensitively explain to her regarding the post mortem procedure involving making and incision over the dead body systematically to obtain information about the underlying cause of the problem. Any associated disease and syndrome can also be determined. This is important for future counseling on her nest pregnancy.

I will inform her regarding the disadvantages of the procedure which include delaying the funeral of the baby. It may also cause disfigurement of the baby as a result of the incision on the body. It may also considered too invasive unacceptable for some parents.

I will inform her regarding the alternative to the post mortem examinations which are less invasive. These include taking intra-cardiac blood for infective screening. I will inform her that skin biopsy of the baby can be taken and sent for cytogenetic analysis. A full body x-ray can be done to rule out skeletal abnormalities.

I will give her written information to her regarding the post mortem. Patient’s choice of management should be respected. All counseling and patient final decision should be clearly documented. An appointment to bereavement clinic should be arranged to assess her acceptance and review of her post mortem result if it is done.