Anencephaly

BittyBabyGrower, MSN, RN · Jul 20, 2004

I remember the first time I saw a baby like that...it literally took my breath away and I felt sick. I felt horrible, but then I tried to think about how the mom felt...probably even worse. Those babes can live a for a while..they usually have some brainstem and that is all it takes. Microcephalics are like that too. They are such sad little babies.

Don't feel bad...it is a bit hard to look at a baby like that and not think...geez..why and how. I have seen many kiddos over the years that have had horrible nasty things...and it just breaks my heart. It will get easier as time goes on. I think you did a good job and probably made that mom's day by asking her what she named the baby and touching it.

at your cervix · Jul 20, 2004

Don't feel bad about your reaction to the baby. It can be difficult the first time that you see something like this.

Regarding no brain vs small head-usually the baby only has a brain stem, which explains why the baby has a heart rate and was breathing. These babies usually die shortly after birth. In fact, many mothers choose to terminate the pregnancy when they discover anacephaly (via ultrasound) and this decision is generally well supported by most religions.

Hope this helps!

SmilingBluEyes · Jul 20, 2004

MY heart goes out to you. Yours was an understandable and common reaction. Seeing this for the first time, especially, is so shocking. Dont' berate yourself. You were not in an easy situation at all. (((HUGS)))

fergus51 · Jul 20, 2004

Ditto. Even those of us who have been working in OB/NICU for a while still see things that cause us to react strongly. It's a difficult situation.

pebbles1977 · Jul 21, 2004

Thank you guys for your support. This has been a hard evening for me, thinking over this and what I did today. I tried to do my best, but you have to imagine the mom saw my reactions (as well as I tried to hide them). Bless their hearts, they were a sweet family! I'm just mad at myself for not being like this was the most special baby in the world. Heck, I didn't even want to look at her. But I did, and the more I think about it, the more special she is.

And I think it is nice that the mom didn't terminate early, because at 39+ weeks, she got to know her baby for a little while anyway. I don't know what I would do, but I'm happy for her.

Thanks again!

Baby Catcher · Jul 22, 2004

I talked to the midwife, but did not ask her about the specifics of the condition (didn't want to seem ignorant).

Don't ever be afraid to ask questions. It shows you're thinking and want to learn.

What an awful experience for you.

Destinystar · Jul 22, 2004

anencephaly is absence of the cerbral hemispheres, is incompatible with life. the absent brain is sometimes replaced by malformed cystic neural tissue, which may be exposed or covered with skin. varying portions of the brainstem & spinal cord may be missing or malformed. no diagnostic or therapeutic efforts are helpful, & these infants, wither are stillborn or die within a few days.
microcephaly is decreased head size is often associated with defects & there is usually moderate to severe motor & mental retardation.

hi guys! i don't post much here, but i read quite a bit!
if anyone knows from my former posts, i work on a gyn unit that takes all the ob overflow, and i'm going to go to l&d in october.
here's what happened today. please don't judge me, as i need opinions and to express what i felt.
yesterday i found out during charge report (where the charge rns from l&d, pp and gyn get together to discuss beds), that there was a lady in labor with a baby who had anencephaly. she ended up coming to our floor today (we always take fetal deaths, etc). but her baby was still alive. it wasn't a nursery baby, just a baby she wanted to stay with her at every breath. this happened to be my patient. i had never seen a baby like this. it's face looked honestly (please don't flame) like an alien. big eyes, big bloody cracks in the face, wide cheeks and very small mouth. bless the girl's heart (pt), she was only 22. it was her 3rd child. she didn't want to cradle the baby, but tried to nurse. then tried to drop bits of milk from her breasts to it, then asked if she could formula feed. i contacted her cnm about this, and got some good advice on how she could do this.
then the baby's head started bleeding more. it had a cap on. she asked me to change the cap. i did, and did not prepare myself for what i saw. the baby's head was exposed, with some sort of tissue red and bloody coming out. and very short (basically i had to fold the hat several times to keep it on). this shocked me, and when the baby had a reflex jerk to me doing that, i jumped as well. i don't think this was a fair reaction to the mother who wouldn't even look at it. the baby scared me, and i shouldn't have shown it!
i was chatting with another nurse who has been a nurse for a long time. i was telling her about this, and she said, oh that means it has a small head, not no brain! i really thought it meant no brain. i chatted with my manager about this, and she said no brain. i asked how it could have a heart rate of 120s-100s (i checked via stethoscope q30'), and no brain. she had no answer. i talked to the midwife, but did not ask her about the specifics of the condition (didn't want to seem ignorant). i was just asking how long the baby would live, and she said a few hours to a few days.
i know this is long guys, but really, have you guys had a first experience with this? did you feel guilty about your reaction? and what exactly does anencephaly entail? how is this girl alive now? i did in the last part of my shift (after cooling my nerves for a bit) coo over the baby that was also making a few cooing sounds, and still alive. i asked what they named her, and petted her face. i try, but i'm just so upset over this. why would this happen?
thanks so much

gypsyatheart · Jul 24, 2004

My heart goes out to you and the family, both. What a difficult situation! It is hard to see some of the defects little ones are born with. I agree, don't beat yourself up. I'm sure the family felt your compassion.

OneRN · Jul 24, 2004

The instinct to care: in the form of the mother trying to nurse the child; in the form of the nurse helping her and being glad she didn't terminate the pregnancy. I see God in the mother, in the baby, and in you. Thank you for showing that to me today. I needed to see God, today.

CA CoCoRN, RN · Jul 27, 2004

Don't be fretfull about your reaction, as long as you're supportive to mom and didn't run screaming from the room at the sight of poor baby...

I still cry at fetal losses. Just Thursday, I had a mom who was having her seond baby, began cramping and bleeding....when she came in she was 7cm. She was only 23 weeks by dates, 20 by size. She held on to it for a couple days. We steroided her, Mag-ed her, she was on BR. Anyway...it didn't work...and Thursday right at change of shift she delivered.

She wasn't even my pt that day...but when I'd heard she ROM'd, I went to see her and told her I'd be there with her.

Turns out, I got un-busy...and her primary got busy...so I was with her when the time came.

WE cried. I didn't bawl, but I don't feel bad about shedding tears with her over her loss. The little "Angelita" was her second daughter, born too soon...eyelids still fused. NICU was there...but she only had a HR of 7 on delivery.

Though I cried...I was still able to retain my composure and do what I was there to do for her.

And by that same token, though you were shocked at what you saw, you still "did your job". The next time, and the time after that, you may still be shocked. Cases present a little different every time. But gather the info that you need, learn all you can with each case without fear of looking stupid, and you and every future patient will benefit.