makes you think

littlepeach · Aug 16, 2008

I think that a lot of foreign countried get it right and just letting a lot of the littlest ones pass on their own. Sometimes I think we torture them just for md and resident practice.

rph3664 · Aug 16, 2008

I think that a lot of foreign countried get it right and just letting a lot of the littlest ones pass on their own. Sometimes I think we torture them just for md and resident practice.

And if the parents can pay the bill.

We know of a family who had a 24-weeker who was so underdeveloped, he didn't even urinate without adult-sized doses of Lasix! He was kept "alive" for three months; to this day, I believe he was finally allowed to die when the insurance ran out. He was a HELLP syndrome baby, and I have never heard of one who did well, even when they are born at term. What is the observation by other people who deal with this directly?

:lttang:

Thing is, it's often so hard to know who's going to do well and who won't.

Imafloat, BSN, RN · Aug 16, 2008

My friend has a HELLP Syndrome baby. He is home, he was born at 28 weeks and spent 70 days in the NICU. I don't know if he had bleeds or anything like that. I don't want to pry and ask, but I am curious. He seems to be healthy.

Our tiniest are kept alive because the parents want everything done.

rph3664 · Aug 16, 2008

My friend has a HELLP Syndrome baby. He is home, he was born at 28 weeks and spent 70 days in the NICU. I don't know if he had bleeds or anything like that. I don't want to pry and ask, but I am curious. He seems to be healthy.
Our tiniest are kept alive because the parents want everything done.

I can see what you mean. I didn't have kids and certainly hope I never have to make a decision like that for anybody. One of my friends gave birth at 26 weeks (not because of HELLP) and her daughter is completely normal. We all know that isn't always the case.

The first time I ever heard of HELLP syndrome, it was a friend of a friend who died of the disease but they thought they had saved the baby, who was born near term. The baby died of SIDS at age 3 months; who knows, it might have been a coincidence. We've had a few HELLP moms where I work; their babies always had to be transferred even if they were at or near term because our Level II nursery couldn't handle them.

prmenrs, RN · Aug 17, 2008

Almost 25 years ago, I meet an ~800gm 28 weeker born to a heroin mom. He was in the hospital for 3 1/2 mo, had gr 3/4 bleeds, a shunt, nec, a broken femur 2o to rickets (from Lasix).

I adopted him. He still has "issues". Developmental delay. Shunt is good right now, but always a worry. He works in a "supported" position, i.e., an agency (ARC) pays his salary, he and 3 other spec needs adults clean the inside of school buses under supervision of a job coach. He takes the city bus to work and can get to 3 different malls by himself. But--he's awesome. Great sense of humor. Puts up w/me (most of the time).

Parents do fall in love w/their children; they don't know what they're getting themselves into, and they have a LOT to deal w/--school districts, therapists, sometimes even people who have no business butting in, but do anyway.

I didn't know what I was getting into, but I'm sure not sorry I did what I did.

rph3664 · Aug 17, 2008

Ever heard of this website?

http://www.narof.org

It's certainly thought provoking. Do people with special needs children REALLY get that "Welcome to Holland" essay? Good heavens, everyone's life is full of trips to Italy, Denmark, Poland, etc.

Julia323 · Aug 17, 2008

The nurses here talk of the parents being in denial when referring to their child's situation. That the neonatologist has done a good job of informing these parents the seriousness of the condition. If a parent is asking such question as playing football while their child has a shunt that screams to me that the staff has not done an adequate job of informing these parents how serious their child's condition is.

When my son was in the NICU I repeatedly and forcefully asked the nurses and doctors what my son's outcome would be. What are the long-term effects. What should we be looking for in the future. Every time I was given a glossy smile and spouted to about "every child is different", "only time will tell", "the majority of these kids, once they leave the hospital, are fine". I was told that my son's complete right lung collapse and partial left-lung collapse was "normal, nothing to worry about." I was told that his grade 3 bilateral brain bleeds meant that "the majority of the time these kids are fine with no lasting effects". When I asked what the future implication of him being on an oscillator for 3 months might be I was told "he doesn't have to go home on oxygen so he should be just normal."

I have spoken with numerous preemies moms since then and the overwhelming feelings of being lied to, having their child's condition put in the "best possible light" when realistically it was bad, and the general lack of information from the doctors and nurses as atrocious. Many of these preemie moms who used to view the NICU nurses and doctors as their child's miracle workers, as they watch their child grow and the disabilities continue to mount and the more and more therapies and doctors their children need, are angry and bitter toward these people now.

Not to mention the public view of the "catch up by age 2" line that is spouted at every turn. This is ridiculous. Most of these children don't even get the correct diagnosis until after that. Time after time I see a preemie mom who goes to a "follow-up preemie clinic" to be told their child is normal and on track while still having a list of 9 different doctors they see, 2 speech therapist appt.'s a week, an OT appt. and a physical therapy appt every week. They've endured 2 surgeries since leaving the hospital, a hospital stay because of some sickness and the doctors have the guts to tell them their child is fine and on target. Once a preemie, always a preemie.

The overall opinion from these parents is that the hospital is just looking to treat the child and get them out the door while avoiding as many uncomfortable "talks and discussions" as possible. While the parents pick up the pieces and are left to agonize over what is wrong with their child and to navigate the medical community by themselves as they now try to get answers and prepare for the devestating outcomes of their childs preemie condition.

I know this is harsh, and I know that the nurses and doctors do love their patients. But the treatment and questions that are left unanswered are overwhelming for parents when the NICU refuses to give you the information and statistics you need. Being in a hospital for 4 months, as my son was... of course there are going to be long-term effects. But not one of the nurses or doctors at my NICU would disclose any of it. I got the distinct impression they would rather have outside medical professional deal with this rather then give it to the parents straight and upfront while still in the NICU. This is a widespread problem with NICU's and unfortunately, only those who are now "too old" for the preemie follow-up clinics are enduring the process while the hospital writes their child off as a success.

rph3664 · Aug 17, 2008

Julia, your story sounds like stories I have heard about, for example, an autistic 7-year-old who wears diapers and has no language, and she is labeled "high functioning." High functioning as compared to what?

Good heavens, the people I have known who had disabled children - or became disabled as adults - were always told the worst case scenario so they wouldn't have false hope.

And when I say my friend's daughter is normal, it's because she IS normal. She never needed any physical, speech, etc. therapy, has a normal IQ, did things like crawling and walking right on target as related to her gestational age, and has had some health issues but nothing out of the ordinary.

munkypants · Aug 17, 2008

giving a long term diagnosis is not an easy thing to do as a NICU nurse. I care deeply about not only the babies in my care, but the parents and carers that find themselves there, and try to give them as much information and as much of my time as is physically possible.

Julia you sound like you feel you were shortchanged in NICU, not all are like that.

prmenrs, RN · Aug 17, 2008

Thing is, the "trip to Holland" lesson helps, but it's a journey every parent makes @ thier own pace. In the course of my son's life, I've seen lots of parents and special needs families, and it's really an eye-opener.

I believe it's a bit like grieving the child you thought you were going to get. Anyone who's lost someone knows grief recycles. I originally thought something to the effect of: I can FIX him. So, everytime another test reminded me I couldn't, I'd feel overwhelmed, sad, etc....

After a while, parents "reframe" the problem: well, ok, he's got a shunt, DD, etc, but at least he'll never get drafted. That was my mantra for a while.

Dealing w/the school districts--it's a lot like bargaining. "Look, I've got to offer him as many opportunities to succeed academically as possible. If he can't figure out math this way, can't we try this other system?" I once told the school, "It's not my intention to be the Mother From H---, but I'll go there if necessary!" With a smile on my face.

I think it helps if nurses know what's ahead for parents of "at risk" babies. Talk about the newborn developmental follow-up visit. Developmental observation can start before d/c and, if therapy is indicated, get that started. Have mom call her school district to start early childhood intervention programs, those can have waiting lists. Know the resources in your community.

We get so caught up in the ICU mania, but we all know there's more to the story.

Whether we should or shouldn't save these babies, IMHO, lacks practicality. What are we dealing with @ the moment? How can we make things better for THIS particular family? To me, that's more important than pondering the ethics (altho we can certainly do that, too).

rph3664 · Aug 17, 2008

I'm "normal", whatever that is, and still, my mother never passed up an opportunity to remind me that I was not the child she really wanted to have; I won't go into the reasons why right now.

I know a woman who has a severely disabled child (not because of prematurity) and good heavens, if I had a kid like that, I would be very tempted to constantly tell people things like, "WELL, GOODY GOODY GUMDROPS FOR YOU! YOUR KID WENT TO ALL STATE? MINE ISN'T EVEN GOING TO SPECIAL OLYMPICS, SO JUST SHUT YOUR $%^&* MOUTH!" I understand that special needs parents are instructed to never do that, but anyway.....She and her husband have devoted their lives to giving him the very highest quality of life that he can have. She once remarked to me that he was otherwise healthy, and I said, "How could he not be healthy? You take such good care of him!" and that's true.