Bit about the background
As the paediatric house officer we work in the post-natal ward for 5 weeks 24/7 and part of the job is responding to emergencies in both the labour room and OT.
I was informed that a mother with a child diagnosed with anencephaly via antenatal scans had gone into labour. On informing my seniors in the NICU, I was told to see the child when delivered and as anencephalic child generally do not live for more than a few hours that nothing needs to be done except to confirm to the mother the child’s diagnosis once it was established and to break bad news.
The mother was young in her 20’s and was currently at about 35 weeks of gestation when she had gone into labour. She had a previous 1st trimester miscarriage, but no other known risk factors. She was not on any anti-epileptic or any other medication.
So what happened?
The child was delivered via normal vaginal delivery and came out lifeless. I immediately took the child and what I saw really broke my heart. A child, gravely dysmorphic, with exposed brain protruding out of his head. Big round eyes (bulging orbits) with eyelids that could not close and minimal skull formation. The child also had poorly formed male genitalia and barely perceptible breast buds. Other than that he had 10 fingers and 10 toes.
He was pale in colour, with no tone, no spontaneous breathing and no reflexes. However he had a heart rate of about 100/min. I informed the NICU because after all this child had a heart beat and I simply could not do nothing. The NICU-RHO informed our consultant and as the child had a heart beat, he was admitted to the NICU. On admission to the NICU his heart beat had dropped to 60 beats/min and a few hours later it came down to 30 beats/min. Finally succumbing to his death about 6 hours after birth.
The mother and family was supported and allowed to grieve the child’s death. She also wished to see the child before he was taken to the PBU and so after covering the brain matter I showed the mother her child.
What is anencephaly?
Anencephaly is a lethal neural tube defect which has both an absence of brain tissue and skull. It occurs when there is a failure of the antral tube (the part which develops into the brain & skull) to close during the development of the embryo. There are varying reports as to how often it occurs, but the CDC estimates about 3 in every 10,000 births in the United states. Many cases of anencephaly undergo spontaneous abortion in-utero. The condition can be diagnosed by antenatal scans. Highly elevated maternal serum AFP also is a marker of neural tube defects. As the condition is fatal, the only management done is supportive and bereavement counselling for the parents. The mother should also be given a high dose of folic acid in her next pregnancy to reduce the risk of recurrence. Anti-folate medication (sodium valproate) has a high risk of causing anencephaly and folate supplements are given during pregnancy to be protective against neural tube defects.
Important points
- When a newborn is delivered you should immediately check CTBHR (colour, tone, breathing, heart rate and reflexes).
- As the baby will die, documentation is key! Time and date your entry in the BHT and write down why you were called to see the baby. CTBHR and what you found on examination. Who you informed and what actions were taken should also be documented.
- Anencephaly is a lethal condition, these babies do not usually live for more than a few days.
- Your communication skills with both the mother and family is vital. Before speaking to the mother go through the main points in your head. If you’re not sure what to say ask a senior to come along with you. Remember the main thing with breaking bad news is to pause (a lot) and give the patient time to process all the information they’ve just received.
Here’s a good link about breaking bad news: http://www.oscestop.com/Breaking_bad_news.pdf
I initially had included pictures, but after thinking about it for a while I just couldn’t go through with uploading it. The death of a baby (with or without anomalies) is something that is always going to break my heart and I just couldn’t upload it in good conscious. As always I would love to hear from you! Comment below!
