How do you cope with a baby with multiple problems?

ktwlpn, LPN · Apr 4, 2004

More specifically, how do you cope with the feelings of frustration? I took care of a 10 month old that was brought from home to our ER, for being "unresponsive", although his ability to respond in a normal situation at best is turning his eyes toward sound.
I don't want to go into real specifics due to HIPPA, in nutshell, this child was a normal child until an apnic episode at a few weeks of age. Since that time the child can't eat or breathe on its own. They told the pediatrician that came in that they wanted tests done that would tell them what was wrong with their baby and what the life expectancy might be and where they should go from here.
My sense is that they are wanting a miracle test so they can get a miracle cure. We don't have a PICU at our hospital and the baby had just been released from one of the best ped hospital's in the country. They evidently had told the parents that the baby was fine to go home. The parents weren't satisfied with the care the baby got at this hospital so the baby is being transferred to another ped hospital in this area.
How do you cope with the frustration of parents not seeming to have realistic views on prognosis? Who and how do you go about talking to the parents about grim prognosis? At what point do you decide that enough is enough? I hope I am not coming across as cold, it just broke my heart to see this baby suffering so much and knowing it would never have more of a life than what it has now which is not much except occupying a body that can't move or breath or eat on its own.
Am I being cold? How do you cope? This was a very frustrating experience to me.
Thanks,
Pam

I work at the other end of the spectrum-I have known people go into a persistent vegetative state as young as 16 and go on for 20yrs at our LTC....It is hardest for me when I feel that the person is in there somewhere and can think and feel at some level.I tell myself that the others are not suffering because all they know is nothingness.....THis baby does not know anything other then it's "now" I don't think I would not choose to prolong a beings life if I had that choice-but when it is not my choice I won't bear the burden of guilt and sadness....

All you can do is keep talking in a kind and realistic way to these parents.They won't hear you until they are ready to but at least you can know you have done all you can....Get social services involved if they are not yet=they need to take this baby home and see the care it needs...Until then you can continue to show warmth and compassion to all 3-spend extra time bathing the baby if it seems to feel and enjoy it...play music...Hold it in the sunlight in front of the window....It's all in someone else's hands now....Be thankful you don't have to make such a decision....I can't imagine.....hugs to you....

nurseiam · Apr 6, 2004

It is very hard to accept a prognosis when there is no DX. I have a daughter that was 4lbs @ term due to Graves Disease, gestational diabetes, Chronic hypertension, preterm labor, bleeding, severe IUGR. At about 2-3 we started noticing a difference between her and other kids. At 8 she was dx'd mental retarded with an IQ of 70. Now she is 11 and throws out an occasional test score that is years above her peers.

When she was 8 I still wanted a dx that said she has this because of this. I look @ my hx and know that it could have been any or all of those things but I still want to know WHY!!!!!

It is very frustrating for a parent to not know why and not to be able to do something to help. Everyday I ask myself why didn't they deliver her earlier, like they said they would. They did an amnio and said her lungs were immature. Knowing what I know now....lungs can heal and regrow, brains cannot!

Sorry for rambling but I deal with this @ work and @ home so I have a ton of empathy for parents facing the unknown!

Tabatha C. · Sep 28, 2004

I have a question for you since you work with the babies. How is it emotionally stressful for you? I am a senior in high school and i am doing a project on the emotional aspects of being a nurse in the nursery. How is emotionally demanding and have you ever needed group therapy or support to cope? If you have any answers to this or other comments feel free to email me at [email protected].

Thank you- Tabatha C.

nurseiam · Sep 28, 2004

I think that alot of use tend to rely on eachother for support. Our breakroom is away from the rest of the hospital so it is a good place to talk about a frustrating or emotional day. My best friend is also a nurse but in another area so we vent ALOT with eachother.

It would be hard to be open with other people because of the privacy laws. The world can be a very small place.

There are some people that cannot handle working in this type of environment but then there are others that thrive on it!

DelightRN · Feb 5, 2005

Its difficult. There is a lot of underlying guilt and grieving with a diagnosis of this nature. Guilt because parents will always find a way to blame themselves, even for something they had no control over (like an apneic episode that left their child with an anoxic brain injury, such as the one you're describing). Grief because these parents are grieving for the child they once had... a brain injured child is a totally different animal, and it takes a long time... sometimes years... for a parent to accept their child's new functional goals and abilities.

Perhaps the child was ready to go home but the parents didn't receive enough teaching on how to care for the child at home. It can be a daunting task, particularly if the caregivers in the hospital were doing everything for the child (especially one that needs to be vented and probably tube fed, I'm deducing from your post here), and the child is discharged to the parents' care with little or no instruction. Nurses are trained to take care of these types of things, parents generally are not.

In my facility, a neurogeneticist and a pediatrician discuss diagnosis and prognosis with the parents. Or rather, they initiate that discussion. I continue it by emphasizing what the child can do, rather than what they are no longer capable of doing. Maybe the parents need a home health nurse to come and help out for awhile, or indefinitely. Maybe the kid would benefit from rehab of some kind (is this child mobile at all?).

Where are you located? If you're seriously interested, PM me and I can provide you with a boatload of options.