acrania

LizzyL&DRN · Sep 25, 2006

We recently had a mom deliver a baby with hydranacephaly. It was diagnosed in utero but if it had not been you would have never known it by looking at the baby. She was perfect, had all the appropiate reflexes. Our Nicu doc said that at somepoint during brain development there is a kind of interuption in blood flow(a stroke if you will) which allows the tissue to form but is only filled with fluid. Last I heard they were taking the baby home and care for her as best they could for as long as they could. We did some internet research that night and found hydranacephalic infants usually die in the first year. So sad :crying2:

kcjanes · Feb 18, 2010

Anything is possible, my neice was born yesterday with acrania. She looks completely normal. Unless you take her hat off. But she breathes and eats and reacts and screams just like any other baby.. Hopefully God will keep her alive.(:

tewdles, RN · Feb 18, 2010

This weekend at work (level 1 birthing center in hospital) we had a pt who was 32wk pg. the baby had been diagnosed at 20 wk with acrania. She ended up not delivering yet and went home. Has anyone ever seen this condition? I have not seen this, anencephaly is apparently more commonIs it always fatal or has a baby ever survived? All of the literature describes this as a terminal condition.What can we expect when she does deliver? Expect a live birth infant with basic neurological functions intact...breathing, crying, sucking, etc. She was told baby does have brain and baby had reactive strip on efm. apparently these babies have complete but malformed brain tissue, so one might expect them to have basic neurological functioning intactthe ob told nurses that we only provide warmth. this would be the judgment call of the parents in my estimation... what are ehtics/ legalities if baby is breathing at birth? the parents will be allowed to determine what will be provided for their baby. It is likely that there would be some professional guidance for them such as pastoral support and MSW. It is not unethical to keep a baby warm and comfortable and allow them to die from their birth defects which may be incompatible with life.Please help me understand prognosis. The most basic aspect of this is that 1. there is huge risk for infection...the cranium is open and the abnormal brain tissue is exposed, 2. the cranium protects the brain and in its absence there is great risk for inury, 3. there may be other defects associated with the neural tube defectCan anyone share their experiences? Thank you!! jama

To answer your original questions...

It is always a test to care for mom's who are carrying babies with significant congenital defects. I have not seen this particular defect...but I worked in a high risk L&D, so I saw LOTS of poor outcome pregnancies. You have to be honest, but kind and compassionate with these families. It is hard to maintain a balance between not dashing the hopes of a young couple and being a supportive but honest and realistic professional. As you go forward, remember that these women also want to celebrate the births of their children...they want to know them, hold them, love them, name them...ALL of it...part of our job is to help them do that.

Good luck!

rph3664 · Feb 18, 2010

We recently had a mom deliver a baby with hydranacephaly. It was diagnosed in utero but if it had not been you would have never known it by looking at the baby. She was perfect, had all the appropiate reflexes. Our Nicu doc said that at somepoint during brain development there is a kind of interuption in blood flow(a stroke if you will) which allows the tissue to form but is only filled with fluid. Last I heard they were taking the baby home and care for her as best they could for as long as they could. We did some internet research that night and found hydranacephalic infants usually die in the first year. So sad

There's a youngster in my town who has hydranencephaly; my local paper did a story about her a couple years ago, and I work with someone whose own severely disabled child attends school with her. She's tube-fed, has seizures, and has very minimal response to stimuli, although her parents did say in the story that she loves "Scooby-Doo." She's about 10 years old.

:redbeathe

IvanaK · Mar 22, 2010

I wanted to let you all know that my sister had a baby with acrania (complete absence of top of the skull - no forehead, no scalp) and the baby is alive, but still in the NICU. It is a girl, as usual in acrania cases. It also has clubfoot on right foot (another common anomaly). Her eyes are prominent as well. She's 70 days old and breathes by herself. She had a hard time gaining weight but is improving. She has fought 2 infections so far and got better. Some weeks she needs blood transfusions to get stronger, but overall she is hanging in there.

The diagnosis was made during the 15th week of pregnancy, but my sister decided not to do the abortion. She completed the 38 weeks and Vitoria (the baby's name) was born by C-section. You can see some pictures at http://www.amadavitoriadecristo.blogspot.com

The texts are all in Portuguese (my sister is in Brazil) but you can see the pictures at least.

Vitoria has a brain, even though the pediatrician says it doesn't work (damage by the amniotic fluid, etc). Supposedly she doesn't see, or hear.

However, she has responded to people's presence and voices, turning her head towards someone who is speaking, waking up when someone enters the room, turning and tossing on her crib until my sister picks her up (she likes to be in my sister's arms). She likes taking a bath as well.

It is an extremely rare case of a baby born with acrania surviving for more than 1 week.

She was born in Sao Paulo, at the Sao Luis hospital e Maternidade, on January 13, 2010.

As of today, she is still alive.