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
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.