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.
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.
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.
That's how we roll. The developmental care specialist, ophthalmologist, and OT/PT begin their care and evaluations well before discharge. I think it's a great help to the parents to have some of those relationships in place before we send them out into the scary world.
As Ilstu99 (and many others) have said - sometimes no matter how much information the parents receive from all aspects of their child's health care team, they simply cannot understand the reality of the situation. When parents ask questions like "will they need glasses", it may seem like they have no idea what's really going on - what really should be important at the moment. However, for them, at that time, that is something that they CAN wrap their brains around. When there are so many uncertainties regarding their baby, things like that give them something more concrete to focus on.
We recently had a 25wkr who developed severe NEC at 2 weeks of life. He was one of those who when the surgeon opened him up, he should have been closed right back up and the parents told that there was nothing else that they could do. However, (for several slightly obscure reasons) he was given a fighting chance - with less than 15% of slightly healthy bowel to deal with. Obviously, his parents had numerous questions regarding his future, what his chances were, etc.... They would get frustrated with the staff for not being able to give them concrete answers. They would however continue to fuss over every little thing - like whether or not the tape (and other stuff) used to secure his ETT would leave any scars - and if they did - could we get plastics involved. Focusing on that particular problem gave them something more concrete that they could focus on. Now I'm not saying that they were right in their thinking in any of this... (this became the baby that nobody wanted to take care of d/t his parents) but just trying to give a slightly different perspective.
Sometimes, no matter how hard we work with the parents, no matter what the doctors, nurses, and specialists say or how they say it, the parents are going to think what they want to think, and hear what they want to hear.
I dealt with this on a daily basis with D's parents... they outright refused to believe that his large, muscular VSD wouldn't close on its' own - that surgery was the only option. That he really wasn't missing a chunk of his chromosomes. That by waiting to fix his heart, that his lungs wouldn't get worse and worse - and go on to develop horrible PPHN.
We can only do the best that we can.
"Some patients get to us more than others.
But you do everything that you can,
sometimes more than you thought you could,
but at the end of the day -
you have to walk away knowing that you fought a good fight" Dr. Carter, ER
I understand what you had to deal with. I do see some doctors painting a pretty picture for babies when they shouldn't. However, I do see doctors telling the exact, horrible truth and the parents will still refuse to remove life support even if the baby has NO hope of being anywhere near normal. So I've seen both sides. I am very against keeping babies alive when they are severely damaged, grade bleeds, PVL with very little brain matter, flat EEG, etc. I feel so bad when I have to do needless medical things to a poor baby who can't just die in peace.
During a family trip to Disneyland I saw a similar child at the table next to us during dinner. I was "fixated" on that child and all I could think was how many of the babies that I care for will turn out like this???
During a family trip to Disneyland I saw a similar child at the table next to us during dinner. I was "fixated" on that child and all I could think was how many of the babies that I care for will turn out like this???
It's entirely possible that he might have become that way long after he was born. Maybe he was in an accident or had some kind of illness that left him brain damaged? I know of several families where this happened to one of their children.
I think sometimes parents also associate their child's problems with being in the hospital. "Once I get the baby home where they can be in a normal situation, then everything will work out."
We tell our parents as much as we know--which sometimes isn't enough. We do have one doctor who is more "optimistic" than the rest, but other than that, I think our parents are given a pretty good idea of what could happen.
It's hard. As a nurse I can be a bit more objective r/t quality of life. As a mom, I don't know what I'd do. Some of our parents are awfully young to be having to make such hard decisions for someone they've dreamed of, planned for and deeply love.
It seems a lot of the sickest kiddos have windows where if allowed, they could have a "good" death. Once those windows are closed, some of these kids and their families can be in for a life of misery. We've sent several home without any meaningful brain function but still alive.
Like other posters, I really struggle with this. We had a 23 weeker who I don't think had a single moment where he wasn't in pain, but parents wanted everything done. He finally died after several months, but it was a bad situation. We can keep them alive, but we can't always make them live.
I was talking to one of our docs the other day. He started working in our follow up clinic and he was saying how he sees all the ex 24 weekers he cared for coming in with BPD, G tubes, CP, hearing aides, on and on and on, and it gives him pause. He wonders, "Did I do that? Why did I do that?" and he is little more comptemplative with his care on the unit now.
I think this is seen all over the hospital, just as another poster has pointed out in the trauma ICU, ED with adults and also in the PICU with kids.
I understand what you are saying, Julia, and my heart goes out to you because(in my opinion) you received some poor information to say the least.
But I do think that sometimes the severity of the situation just does not "hit" some of these parents even after it has been said numerous times and reinforced. I worked in the PICU last week and my 4 mo old anoxic brain injury pt was scheduled for his 2nd brain death exam. Now, the parents had been told in NO uncertain terms that there was brainstem function only and exactly what that means by an Intensivist and Neurologist and reinforced over and over by nursing and social work for 24 hours. The first thing the mother asked me when I did my assessment was if his "pupils were responding yet". And started telling the baby to open his eyes. Complete denial! Not because she hadn't been told, because she did not want to hear it.(I cannot judge because I do not know how I would react either). I cannot imagine this pain.
Of course he was determined brain dead after the second exam--- and I am always a little relieved in these situations, because the decision is then taken out of the parents hands.
Bottom line is that we do not usually know for certain what any premie will end up like...... but we need to be honest and forthcoming with all of the info, even if it is hard to hear.
Right now I have this 20 day old 23 weeker who is trying to die. He has bilat 4s and is on REDICULOUS settings. He hasn't peed in over 24 hours and has blown up like a water balloon. His whole body is translucent bc of all the fluid in his belly. The mom still thinks he is going to go home. She won't take him off...ugh. This part of my job is always the hardest. I am torturing a baby for the mothers own good. He is going to die...it's just a matter of when.
ilstu99
320 Posts
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.