Can all parents really make good decisions

Gompers, BSN, RN · Oct 23, 2006

Ugh, I'm just remembering a heartbreaking case where we didn't feed a baby. She was born at 37 weeks, mom noticed decreased fetal movement. Babe developed petechiae on her abdomen moments after birth. Gith increased rapidly and abdomen got very dusky. Transferred to us for emergent x-lap. babe had ZERO viable gut. She was taken off support. She received ATC IV morphine until the IV blew. Then changed to nasal Fentanyl. She withered away. Her attending said that this was the kindest way to let her go because dehydration released endorphins.
OMG, I'm totally crying right now. I was about 20 weeks PG with my first when I took care of this beautiful baby. I asked to not care for her again because I couldn't do it without bawling. Her parents were so sweet. It took her 10 days to pass away. I still have a picture of her before she died. Sorry, I needed to get that out.

We had a very similar case in the past. I suppose they could have put in a Broviac and sent her home on TPN until she qualified for a bowel and liver trasnplant, but I think there was something else going on that made it a long shot that the surgery would even work. So they decided to just take her home. She got IV narcotics for a few days while she healed from the ex-lap, then was discharged with no IV fluids. She was followed by hospice and home care, passed away after about two weeks. They were giving her sublingual morphine, I believe. But at least she got to be at home with her family 24/7 and the home care nurse said her pain was well controlled.

33-weeker · Oct 24, 2006

ugh, i'm just remembering a heartbreaking case where we didn't feed a baby. she was born at 37 weeks, mom noticed decreased fetal movement. babe developed petechiae on her abdomen moments after birth. gith increased rapidly and abdomen got very dusky. transferred to us for emergent x-lap. babe had zero viable gut. she was taken off support. she received atc iv morphine until the iv blew. then changed to nasal fentanyl. she withered away. her attending said that this was the kindest way to let her go because dehydration released endorphins.

i can see where feeding in a case like this might cause more suffering, not less. i could see holding feeds as appropriate in such a case.

kate1114 · Oct 26, 2006

What help is there really available for a hoplessly ill infant with bilat grade 4 bleeds, deaf, blind on an oss vent with C02's in 100's,ph's 7.00-7.007 septic, hydroceph with shunt, on Vec gtt, morphine gtt, anitbiots, vessopressors, with a Mom that says no to DNR but does not visit and when she does visit stays 10 min. Does he just stay in this "hellish limbo":madface: . Is there a point or case when someone says "Ok this parent really does not know what is best for this baby"

It depends also on how the information is presented to the family. I worked in NICU for 10 years before finally leaving this year. I have worked in a few units where the docs were good about presenting options to the parents, and giving realistic expectations based on science and statistics.

The unit (teaching hospital) that I recently quit featured docs who switched service frequently (usually weekly) and seemed to put these discussions off until the next doc could arrive. I would often hear about conversations in which the doc would talk about a 24 weeker, grade IV bleed, on the oscillator who would one day go to college. While I suppose there is a chance, this is NOT the typical presentation for this type of infant. But the parents were told that their babies would be "fine". I think that this does a terrible injustice to the parents. Yes, their baby may be "fine", or he/she may be somewhat healthy but struggle through school. Or he/she may be blind, deaf, and severely impaired. Not to say that this child deserves any less chance at life, but the parents need to know the whole story before making huge decisions.

On the flip side, we had parents who would refuse to hear negative news (including one mom who was famous for hanging up on the docs if they told her anything bad about her infant), parents who would blame the nurses/docs for any possible downturn in their infants' condition, and parents who would spend the entire time at the bedside making out with their boyfriend while the mom's infant was crying in the crib next to them. Parents are not always focused on what is best for their child, and that is sad. Thankfully, this seemed to be the exception in the units where I worked.

It's so hard to tell where people are coming from. Are they in denial? Are they misunderstanding the severity of their child's illness? Are they preoccupied with a myriad of other issues at home (being evicted from apartment, domestic violence, care of other children)? Or do they cope by using humor that may seem inappropriate?

Getting back to the OP, even if the baby had a DNR, it may not change the fact that he/she is in "hellish limbo". I've seen babies with similar cases who are DNR status, and who live for weeks or months without coding. Sometimes they improve for a little while and then deteriorate. As others have mentioned, an ethics committee can help point out options to the parents, but they have to be an active part of this as well. An ethics committee can override a parent's desires, but many hospitals won't go this far for fear of bad press.

mauigal · Oct 28, 2006

amen ! amen !

mauigal · Oct 28, 2006

amen!

mom23RN · Oct 30, 2006

That is so very sad for the baby. I truly cannot imagine watching my child suffer so (well... I guess she isn't watching him and that's the point). I guess for me it was quality of life over quantity. I didn't really have that much say in the end, but I was the one who asked medical personel to stop resuccitative efforts and let my son pass peacefully.

My son was born with a congenital heart defect (pulmonary stenosis). He had heart caths, open heart, lung plications, etc. He came home when he was 9 weeks old for one week. He unknowingly developed NEC a week later and was rushed to our local emergency room very near death. I talked to the ER doc and to his pedicatric cardiologist a couple of times during his treatment. The last time I asked to talk to the doctor I asked if they were doing chest compressions and she said "yes". I looked at her and asked her to stop all measures to save him and please let him go.

As a parent it is the worst thing you will ever have to do. Be the one to ask someone to let your child die. But, for me, it was the kindest and most loving act I could do. I (me alone) was the one to give him peace and a beautiful end to a very hard life. For me that final decision had nothing to do with me or my feelings (I would have loved him and cared for him forever) but for him. It was the biggest gift I could give him was to no longer struggle to stay here with us but give him peace.

I think alot of it has to do with all sorts of factors. Social, educational, spiritual, religious, moral, etc. For each person their view on how they wish to keep their child is truly one only they can understand. I can look at someone who has struggled to keep their child alive and think "I would never do that" but maybe for someone who has no one else or no other children just to see that sweet face is what keeps them going.

I know it's hard for those of us in the medical profession to understand but sometimes all these people have is their child. I guess it's one of those things you can never say what you would do until you are standing in those shoes looking at your child wondering what is next.

Personally I think there is more to the quality than quantitiy. Personally I would find it difficult to watch my child struggle so hard. Am I doing it for them or for me?

What a horrible situation for everyone involved. I hope that whatever happens happens quickly and the child can either go home (not that it sounds like much of a home to go to if mom can't even get there to see him) or go HOME to a wonderful place.

(((((((((((((((((((((hugs)))))))))))))))))))))) to everyone who has ever faced this no matter what teh outcome was.

Gompers, BSN, RN · Oct 30, 2006

As a parent it is the worst thing you will ever have to do. Be the one to ask someone to let your child die. But, for me, it was the kindest and most loving act I could do. I (me alone) was the one to give him peace and a beautiful end to a very hard life. For me that final decision had nothing to do with me or my feelings (I would have loved him and cared for him forever) but for him. It was the biggest gift I could give him was to no longer struggle to stay here with us but give him peace.

((((((((((((( mom23RN )))))))))))))

You are a very special person, and your son was blessed to have you as a mother. Thank you for your post. I'm so sorry for your loss.

2curlygirls · Oct 30, 2006

mom23RN I am weeping! I'm so sorry.

I've seen parents like you in our unit on occasion (often cardiac issues). I have such admiration for them.

kate1114 · Nov 1, 2006

I talked to the ER doc and to his pedicatric cardiologist a couple of times during his treatment. The last time I asked to talk to the doctor I asked if they were doing chest compressions and she said "yes". I looked at her and asked her to stop all measures to save him and please let him go.
As a parent it is the worst thing you will ever have to do. Be the one to ask someone to let your child die. But, for me, it was the kindest and most loving act I could do. I (me alone) was the one to give him peace and a beautiful end to a very hard life. For me that final decision had nothing to do with me or my feelings (I would have loved him and cared for him forever) but for him. It was the biggest gift I could give him was to no longer struggle to stay here with us but give him peace.

(((((((Mom23RN)))))))

How loving and selfless of you!!! I think that this is the absolute worst position that a parent can be in. Your decision took a lot of courage and maturity. I had a former coworker who had been in a similar situation, losing a son with a cardiac defect. Twenty years later, she was still tearful, but still believed that she did the right thing for her son.