What becomes of them? - Page 3

My husband's niece suffered a seizure in the womb, and was diagnosed with hydranencephaly. She was breathing on her own, despite having very little that had developed of her brain. The doctors wished to withdraw care and basically let her starve to death. His family refused, and she is 17 today.

I can come at this from both sides of the debate of "If we can save, we ought to." On one hand, she is now 17, she loves to laugh, but that's about all she can do. She knows who I am, even if she can't speak, and she knows who she does and doesn't like. You can ask her questions and she'll make her "yes" noise or her "no" noise, and she loves to hear certain words. She is their little miracle child, and they love her all the more for it. She is now close to 6 feet tall, is tube fed, and lives on the couch. You will never see someone taken care of as well as that girl is. She has someone next to her 24/7, and I mean that in a literal sense. Someone always stays with her in case she chokes and needs suction or to track her seizures, etc.. On the other hand, It has changed the lives of everyone around her. They can't all go on vacation together because she can't go...they can't pack up and go to the park for the afternoon because she can't handle it, she has to sleep in the bed with them in case she seizes in the night or starts choking, etc.. I ask myself if I were in the same situation if i would be able to handle it. As a healthcare worker I look at the situation and wonder to myself if the decision they made 17 years ago to not withdraw care was worth the cost. But if you ask them, they'll say it's hard sometimes, but they'd gladly give up everything for her, even if she is a 24/7 total care kind of child.


In reference to your question earlier about what happens when they grow up and are no longer in pediatrics, well, that's a question many of the families of these kind of children would like to know. 20 years ago, these children didn't stay alive, either by nature or by withdrawal of care. So we are now in a transition stage. The doctors that have been caring for these children as pediatric patients for their entire lives will no longer be able to care for them as adults any more. When our niece gets sick, in a couple years she'll no longer be able to go to the children's medical center where she has been treated her entire life, having had dozens of surgeries, but will have to get a new set of doctors who know nothing of her diagnosis and how to treat them, because up to this point, these children never survived. It's a scary thought for us!

I also sooo disagree with the if we can we should theory. The general public just doesn't know what it will be like, and the majority of our kids that are dependent for all their care never go home. They end up in nursing homes for peds because they can't be rehabilitated and we don't have any near us so these kids end up miles from their families. There are the rare family that sacrifice every little thing for their child, but in reality, most of our clientele are incapable of taking care of these medically fragile and complex kids at home, and many of them are pregnant soon after and never come to see the baby left in our unit. We will have these kids sometimes up to 1 year because they continue to be too unstable to send out or home. How sad is that? That is not a life, to live in a hospital. Many of them come back again and again and it is the one of the saddest things I have ever seen. Sometimes I see these kids, and it makes me not like my job so much. It is so unfair to these children. And who is going to care for them if something happens to their parents? That saddens me even more. There are days I do question the ethics of what we do...where do we stop....they are bringing 22 weekers back to us, we have even had kids that we know are less than 22 weeks, and they live a few days, what I am sure is a miserable exsistence...and why....because we can of course. Even with modern technology, we can not duplicate some things from in utero.

Sometimes, there are worse things than dying.

Knowing what I know now after working in the field (and I don't want to ever be in this situation, believe me), I think my criteria have changed for at what point I'd want my infant resuscitated. It surely wouldn't be at the 23-week mark, and probably really not until about 26-27 weeks. That may sound cruel, but not more cruel than poking and prodding and intubating and oscillating and brain bleeding and even then there are no guarantees? Not to me it isn't. This isn't an indictment of anyone who has chosen/would choose differently, but it feels way more cruel to me to keep a tiny baby alive like that than to just hold them and let them go peacefully.

There is a reason the 23-24 weekers that go on to have no deficits are called miracles....because they don't happen much.

yes! I tried to explain this to my dad once and he went on and on about how medicine would never advance if we didn't continue to try pushing it's limits. Ahh! Not on my baby OR my own life! No thanks! I don't have kids yet but I can't honestly see myself wanting to resuscitate anything under 28 wks...or a hypoplast for that matter. Yes I love my job and taking care of these kiddos but they go through so much and most of the time, in the end, we wonder for what?

I had surgery a few months ago and in pre-op the guy in the bay next to me told anyone who entered not to take him off life support "no matter what" after his surgery (he was having some kind of bypass from the sounds of it) he was very adamant that he wanted the machines for as long as possible. I immediately turned to my parents and said "don't you dare leave me attached to a ventilator for years on end if they tell you it's not looking good" (I was having brain surgery). Not the way I would want myself, or my family, to spend the rest of my life.

You raised some very good points. The impact on the family is incredible. I do wonder, myself, if I have it "in me" to be such a great mum as I see the parents around me that are like an army for their child.
How is a seizure picked up inutero? I did not know that was possible.

Seizures are clearly visible on ultrasound. They look very different from normal fetal movements.

I work on a NICU/PICU stepdown unit full of the kiddos you're talking about. The unit is often used for patients in transition to go home who aren't stable enough, or older kids who bounce back because they're always in and out of the hospital with some sort of infection. The older ones tend to have seizures and/or CP and severe developmental delay. Some are more high functioning but all are delayed. I would say about 50% are truly neurologically devastated on ventilators with total care. Many end up getting dumped in pedi longterm care (we are "lucky" enough to have several of them in my state). 100% of the parents are overwhelmed and fried. I strongly disagree that we should save all babies if we can. There is zero quality of life in being a vegetable full of stage 4 decubs being tube fed and artificially ventilated. They will end up suffering and dying long slow painful deaths. Neurologically devastated kids often turn into neurologically devastated adults, often alone in a nursing home for the rest of their lives. I'm sure my opinion will not be popular, but it is the truth and something I feel strongly about working with these kids on a daily basis.

I used to do in home care for a lady like this. She was kept at home until 20 or so, when she moved into her own apartment with 24-hour aides. The family just took care of her themselves until she got too large to move without assistance, around age 16. She was quadriplegic but had no mental disability outside of some learning disabilities.

As a NICU RN and a foster mom to a Bilateral Grade IV and PVL baby let me tell you that sometimes they surprise you. I was told I was taking this baby home where she would most likely die and five months later she is a crawling, cooing, smiling ball of love. It's rare, but sometimes a kid can surprise and a miracle can happen. It's not always depressing endings to these stories.

I've recently been caring for a baby being cooled on a cooling blanket. He's a big, beautiful term baby, and his parents are so sweet...I want more than anything for him to be ok. I've seen a few concerning neuro movements and possible seizure activity, but it's so hard to know what the long term prognosis is for these children.