makes you think

  1. 1 Today I was out and about, running errands. I saw a family while I was out. Parents and their twins. The twins were about 8 or 9, they were in wheel chairs, with contractures, and they appeared to not be cognizant of what was going on around them.

    I can't get them out of my mind. I bet they were 24 weekers with grade III or IV bleeds. I think that I forget that our babies will grow up. When we send a baby home, they are acting like a normal baby, no matter how bad their head is.

    I am a primary for a baby with hydrocephalus due to a grade III IVH on one side and a grade IV IVH on the other side. He has PVL too. He is getting a shunt in the next few days. The neurosurgeon was in talking to the parents yesterday and the dad asked if the shunt would affect his son playing football. The doc told the dad that contact sports were out of the question with a shunt. It made me realize how much the parents are in denial. They have been told the severity of their baby's bleeds, but they just don't believe it. The mom tells me that she refuses to believe that 'nobody is home' when she looks in her sons eyes. Mom really believes that her son is going to beat the odds and have a normal life. Dad isn't bonding with the baby, he actually called him an it before.

    I don't know why I felt the need to ramble so! It was just jarring to see those kids.
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  3. Visit  Imafloat profile page

    About Imafloat

    From 'NC'; Joined Sep '04; Posts: 1,311; Likes: 1,064.

    21 Comments so far...

  4. Visit  littlepeach profile page
    0
    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.
  5. Visit  rph3664 profile page
    0
    Quote from littlepeach
    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?



    Thing is, it's often so hard to know who's going to do well and who won't.
  6. Visit  Imafloat profile page
    0
    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.
  7. Visit  rph3664 profile page
    0
    Quote from WeeBabyRN
    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.

  8. Visit  prmenrs profile page
    11
    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.
  9. Visit  rph3664 profile page
    0
    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.
  10. Visit  Julia323 profile page
    0
    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.
  11. Visit  rph3664 profile page
    0
    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.
  12. Visit  munkypants profile page
    2
    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.
    HappyPediRN and RNSC like this.
  13. Visit  prmenrs profile page
    0
    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).
  14. Visit  rph3664 profile page
    0
    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.
  15. Visit  ilstu99 profile page
    9
    Quote from Julia323
    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.
    It's difficult to help people understand. It's difficult for them to assimilate everything they are seeing and hearing into their minds. It's difficult for them to let go of the mental image they have had for 24+ weeks of what their baby would be like....what their labor and delivery would be like...what family would mean after their baby arrived.

    I've been with the family of a 24-weeker on a vent, with possible NEC and IVH, and had them ask me every 2 hours...."So when do you think she will be able to go home?" I know that I've been very clear. I've listened to the MD explain the circumstances and prognosis very clearly, and the NNP reiterate the same information. I've asked them if there was anything they didn't understand in those conversations, and simplified things as much as possible. We have the exact same conversation the next day...and the next....and the next.

    The other common questions are things like, "Do you think she'll need glasses?" "Do you think she will be able to join gymnastics like her sister?" "Will she be allergic to peanuts?" It's not that they are unintelligent. It's just that they are not in a place to hear. They simply cannot. This picture just does not fit. It may take weeks or months for them to understand, if they ever really do during their stay with us. I think many of them don't really understand until they return to their every day, and really see how much it has changed.

    As for prognosis - at the critical point of decision-making - much of the same applies. So does, "I do not know." I really don't. If someone tells you that they DO know what the future holds, they're lying. There are too many things about how preemies grow and heal that are mysteries inside their own bodies. I would never EVER want to sway a parent's opinion with statistics and "maybes." I WILL give them resources to find out for themselves, but that's where my job ends. I cannot imagine a parent thinking, "We will change to palliative care, because ilstu99 said it's best." It must be the parent's choice. And really, once a parent has said "aggressive treatment," and a child makes it through the roughest points...there's no going back.

    The truth is that the exact same principle applies to any other kind of medical prognosis....car accident survivors, stroke survivors, people with all types of heart disease, and on and on. The human body, with everything we know about it, is still a huge mystery. I don't know why one 28-weeker goes home with no oxygen support and never develops another complication from their prematurity.....and the 28-weeker in the next isolette sees a physician every other day until they're 12. Please remember that for every preemie and parent you see at the doctor's office, there are many more you never see.

    I'm not a fortune teller or a soothsayer. I'm a nurse. I do not doubt that there are physicians and nurses who avoid difficult conversations and sugar coat the future. I also do not doubt that there are parents who choose not to hear the negative aspects of their choices. I've seen both, and they both break my heart. I wish you and your child the very best.
    Karley9336, PICNICRN, not.done.yet, and 6 others like this.


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