When "do no harm" meets parental denial

MishlB · Jan 7, 2005

It's so sad...but not only the micropremies. How about rescusitating for over 15 minutes to get a HR? Flat EEG's, no head growth, seizures. Since he "looks" normal, he must be OK, right???? WRONG! Sure, I believe in miracles, but organs without oxygen DO NOT survive without SOME effects!!!!!!! And I so agree about the docs rotating and not wanting to take responsibility for TRULY educating. I simply called the neurologist and asked him to come up and talk to parents. Please tell them the baby IS NOT A NORMAL term baby!!!!!! AAAAAARGGGGHHHHHH!

chris_at_lucas_RN, RN · Jan 7, 2005

Not to rain on your parade, OP, (could this situation be any worse?) but there are two factors here that need attention.

These parents have serious anger control issues AND premature infants have a much higher than average risk for abuse.

This baby will not make it to adulthood.

The courts probably need to be involved. Probably should have been when the parents came to blows. The basis is the continued abuse of the child (infliction of pain without any hope of benefit, AEB the bradying and desatting) at the insistence of the parents. No clue how you might get this going. I like the idea of the ethics committee.

The article about 50% of these superpremies making it, etc., is very nice, but its suggestions are only going to work for people of normal intellect and mental stability. These parents lack that.

It's unfortunate, but sometimes nature really should not be messed with.

Sorry if I sound heartless, but the situation really does beg for some sort of intervention in the best interests of the child. These parents do not have it.

Good luck. (This is why I really, really prefer much older clients. I don't have the fortitude that you all obviously have.)

LilPeanut, MSN, RN, NP · Jan 7, 2005

I've seen Baby Girl Scott (well, msot of it, I always miss the first 45min. grrr) and it is heartbreaking.

I also agree that with the physical altercations occuring between the parents, more intervention is needed.

Sounds like a sad case all around

BittyBabyGrower, MSN, RN · Jan 9, 2005

In the last year, I have seen more and more of these types of scenarios and I just feel that it isn't going to get better. I know that our SW would have been like...oh, they are under so much stress, they are just venting. Blah, blah. The media doesn't help either. This is going to be an on going trend in our little world unfortunately. Ethic committees are great, but they can't force the hand of the parent to take the child off the vent. You have to go to court to get a medical futility claim. We have only done this once in the 18 years I have been there and it wasn't pretty. You can say, we have done everything we can, stop some drips, etc, but you just can't pull that tube. Baby has to declare him/herself.

Like I said, we are all going to be seeing more and more of this in the future as neo's strive to save the smaller and smaller and parents demand that things be done.

BlueYYsRN · Jan 30, 2005

Sorry for the delay. Thank you all for your responses. Baby J is still hanging in there. From what I can tell he is a bit more tolerant of his "care". My co-workers know how I feel so I don't get assigned to him that often. Our unit is so sad right now and there are many factors contributing to it. 1. Half of our beds are filled with chronic babies and half of those will probably not make it out of there. Our hospital does not have a PICU and these kids are too sick to go to Childrens. 2. We are in the midst of a management change, the new NM is very well respected so all should go smoothly but its still an adjustment. 3. We have a new neo that is out of control and driving everyone nuts but thats another thread... lets just say I am going to look up threads pertaining to "abusive doctors", "doctors with ADD", and "diffusing volitile situations". I haven't been subjected to the worst of his tantrums but it says something when the tension is so high for EVERYONE when he works.

Again, thanks for letting me vent. Believe it or not, for the most part I love where I work and feel we have a good unit. Its just not usually the good things that compel us to write.

LauraF, RN, ASN, CNA, LPN, RN · Jan 30, 2005

I'm here with the parent's perspective. I think my husband and I are far different though then the family you are dealing with. My daughter was born hours into her 24th week. Her eyes were still fused. She was a 400grammer. It is frustrating with the docs rotating out. I did have a Fellow that was a Neonatologist who told me I could page her no matter what with my questions. My daughter had pneumo's in both lungs, a cerebellum bleed, ROP, she got NEC, she had Adrenal Cortex insufficiency along with many other problems. The first Nurse practioner set me down within hours of delivering her and said "Look we need to know how far you want us to go with your baby. She has a 5% chance of survival. Of that 5% she has 1/2% chance of leading a normal life." I told them to do everything they could for her. If it meant she was going to live with us all her life then so be it. Husband and I have a very strong relationship. Dealing with a premature birth causes great stress on a marriage, and it has a high percentage of divorce rate. I watched that baby get coded 4 different times. But she is now 4 years old. I often think about that choice we made. Was it the right one? Will she always have problems? It is a choice my husband and I have to deal with everyday, and probably for the rest of our lives. Our biggest concern is what will happen to her when we are gone. She has a brother that is 7 months older then her, that will probably be burdened with our decision. I hope and pray that she will be able to function on her own one day. But at 4 years old, not walking and barely talking, not being able to control her impulses. It scares me. I know what that mother is going through, and it is even more difficult if she is not getting the support of her husband. I don't think I could have gone through 6 months of her being in the NICU though. I would hope I would have said, enough is enough before it got that far. I know that it is a hard situation to be in, but maybe seeing it from a parents point of view, who does and did understand the conciquences of her actions, might help you better understand that mother. :cry: