Premature hospitalized child not getting the best care he deserves, what have some parents done in this case?

Question

My premature son is in the hospital now, he has been since he was born. We keep getting different conflicting stories from doctors, nurses, nurse practitioners, and we keep getting told these are "normal" premie situations that happen as he continues to have more and more things happen to him every time we leave to go home and shower, sleep, work. He is due to have surgery, has been several times for his heart and it keeps getting post-poned for various reasons they keep giving us. He is losing weight, I walk in to see him and he appears to have been crying for a while by the redness of his eyes and no one is around to sooth or check on him. I see other people's children also getting the same treatment while I stay there for hours on end with my child. I hear and see things that make me uncomfortable to keep him in their care. I have been told by other hospitals I have checked into transferring him to that where he is at is one of the best places for him to be. Babies need better care.

I HAVE gone to the administrators, by the way, I am not that dense. I also got an attorney, which they won't return the many attempts he has made to call and to no avail. I asked on here because I thought there might be some other solutions/ideas/answers. The place said that they can have a meeting with me but in the meantime things keep happening to him. My fear is that the more I ask, the more they avoid and dodge from what I am getting in response. There is no family local and if I stay all the time I end up wanting to slap the crap out of them, which could get me thrown out and cause more problems. I am by his bedside all the time, but do have to occasionally leave to pay bills and take care of other things from time to time. It has already been 7 weeks he has been in there and our options are limited in what choices we have with the specialists that he needs.I was mainly looking for other families that have had similar problems and perhaps some of their solutions.

I cannot even choose a best answer due to the last three answers I just read being wonderful input. These were some of the advice I was looking for. Mothers in similar past situations. He had his surgery finally, by the way, is recovering wonderfully so far. I can't wait to get him home and when he gets transferred back to the other hospital, I plan to have a multidisciplinary meeting with all of his doctors. I called several hospitals around the country that were recommended and got advice from their doctors and nurses in what I should do. So thank you for the few people that had sincere words,experiences, insight and advice.

Answer 1

If your baby is in an environment like what you described, then, yes, I would say you have problems!! And if that's the best that's available in your area, then that is absolutely shameful!! (It is *possible*, however, that the *human* care is better elsewhere, and it's the *medical* care that is best at the hospital where your baby is...)

As to what to do, I would suggest you *never* leave the baby alone there. If you can't be there, have another family member take over before you leave for *any* period of time. While medical treatment is important with a sick baby, human care is important with *every* baby!! (Not to mention toddlers, children, and adults!!)

If at all possible, get a second opinion. A well-respected doctor from outside the hospital *may* be allowed to visit and evaluate a patient (although they will probably give you a hard time about it). The problem is that you have to find someone with a *really* excellent reputation... If you can't get the doctor in to see the baby, make an appointment for an office visit. Bring all the objective data you can (readouts on oxygen saturation, breathing, heart rate, etc.) plus whatever evaluations you have available. Scribble notes when nobody is looking if nothing else works.

Answer 2

I also had a preemie, not a fun situation by any stretch of the imagination. I felt the staff there was good to my son though not overly sweet or loving which is a horrifying prospect for a mother who has left her children's life in the hands of others. There are so many factors to consider though. Perhaps they let him cry longer than you would because the risk of opening his isolette and removing him far outweighs the repercussions of letting him cry a bit or changing him ahead of schedule. If he has a heart condition I assume he is prone to infection and has an underdeveloped immune system. While everyone may say a mother knows best, this is a delicate situation and sometimes you have to let go a little and accept that the NICU staff and doctors are doing the absolute best job for him and their vast experience with babies outweighs yours. I would verify that he is getting routinely checked throughout the day whether you are there or not, that they're weighing his soiled diapers and comparing that to his recent weight loss, that they're continually reevaluating how much breast milk or formula he is receiving and all the other things that the staff does to make sure he's doing well. If they slack off and don't check these things because you're there that has to stop. Their mission is to make sure your boy comes home to you whole and safe and nothing should get in the way of that nor should it interfere with the all so important time you spend bonding with him...one more thing, have you tried holding him Kangaroo style? Meaning you open your shirt and lay him against your chest, bizarre I know but it did play a part, probably small, I feel, in the way my boy turned right around and made it home to me eleven days after being born.

Answer 3

my first question is what country are you in? if you are in the states, the doctors can generally practice at all local area hospitals, so you can keep your son's cardiologist and pediatrician involved and switch hospitals. if you are in the us, is the nicu (neonatal intensive care unit) that your son is in a level 3 unit? if not, is there a level 3 nicu in your city? a level 3 nicu is the best level of medical care that you can get. and the people who assign the level ratings don't just give them out without there being a good reason. healthcare is most definitely a human contact centered profession. this is also taken into consideration when they assign the ratings and such to hospitals and individual nursing units. my first step would be to check what level of unit your son is in and make sure he is in a level 3.

my 3 year old daughter was born with several congenital heart defects, things we didn't have any idea about until she was 24 hours old. then she was suddenly taken to the nicu. for several days, i felt like no one would listen to me or tell me anything that was going on with my baby. i finally talked to the nurse manager for the unit and that got me a few more answers from the nursing staff. my daughter also had to have surgery and they kept putting it off because they didn't think she would be able to handle the anesthesia or going on the heart/lung bypass for as long as she would have to in order to perform the repairs. she did finally have the first of 3 surgeries at 8 weeks old, the second one at 10 weeks and the third at 7 months. she was not a preemie though, so they were able to get her into surgery a little sooner than another baby that was in the nicu at the same time with very similar illnesses that was born at 32 weeks.

i know how hard it is to see your child in that situation. i wish you and your family the best of luck and you are in my prayers.

Answer 4

go with your instinct, it is stronger than that of a doctor or nurse, move to another hospital if you are not convinced of the treatment where you are presently. premie babies need care ... and a lot of it, major part of it physical soothing and 'touch therapy', how can no one be around? Is there an authority you can report this to, in your city or the senior management of the hospital. if you are not satisfied you will be uncomfortable and not feel right about the course your child's treatment is taking, take matters into your control and move to another hospital, they may not be better than the one you are in but you may end up getting better care.

Answer 5

i understand you are concerned but if all the other hospitals are saying his is in one of the best places then perhaps you may just be reading into things to much. Then again the motherly instinct is normally right. If i were you i would try and take some more time off work and spend more time there to find out whats really going on.

Answer 6

TALK to the staff about your feelings. Do you really think people work there because they hate babies and don't care? Sounds like your child has a multitude of problems and that their doing their best. They want what's best for your baby too...

Answer 7

The state of medical care in the U.S. is getting progressively worse. If I had a child who had to be hospitalized, I would do everything thing in my power to NEVER leave him/her alone for even twenty minutes. Call all your relatives, friends, neighbors, anybody you trust. I would never, ever leave anyone dependent (e.g. child, elderly, very ill adult) alone in a hospital. Never.

Answer 8

HELLO... go to the administrators and find out what the hell is going on.