NICU staff comments help or hinder?

Sweetpeax3 · January 2012

Hi!I know the nurses are frontline with the care provided to our preemie babies so their keen observation is utmost important!! They can see differences between each baby normal vs abnormal...as do physical/occupational therapist. Has anyone ever been told by a nicu nurse or nicu pt/ot that your baby may have cerebral palsy or other development issues? And the MD taking a more wait & see approach? I guess I have mixed feelings on this, not that anyone wants to be told that your child may have cp, is it better to be informed earlier than later? After all the nurses, ot/pt staff must have some sense if things don't look right! I guess they are offering their opinion but is to help or hinder what a parent should do or feel? Not that they were diagnosing but just offering their experience....are MD's just scooting around the issue but deep down they have the same observation but need unreached milestones to confirm? I think I'd rather have blunt opinions to chew on oppose to wait and see approach!!

adrielegorburu · January 2012

I think that just like any other mom whos been in the NICU I just want the straight up truth about everything - but CP is one of those things that they put off diagnosing until later. There can be 'signs' of something that are pointed out be the NICU nurses as concerns but that doesnt mean that CP or another diagnosis is definite. The "wait and see" approach can be intimidating and difficult. I dont think comments like that are a hinderance to parents, its simply an opinion (an educated one) that the signs your LO has CAN be cp or something else. I say read up and educate yourself to the signs and symptoms of CP or whatever they are suggesting might be wrong and be involved and aware of what testing can be done and when. If you cannot do anything right now, shelf it - you will deal with it when it comes time.

ijustcantthinkrightnow · January 2012

adrielegorburu:
I think that just like any other mom whos been in the NICU I just want the straight up truth about everything - but CP is one of those things that they put off diagnosing until later. There can be 'signs' of something that are pointed out be the NICU nurses as concerns but that doesnt mean that CP or another diagnosis is definite. The "wait and see" approach can be intimidating and difficult. I dont think comments like that are a hinderance to parents, its simply an opinion (an educated one) that the signs your LO has CAN be cp or something else. I say read up and educate yourself to the signs and symptoms of CP or whatever they are suggesting might be wrong and be involved and aware of what testing can be done and when. If you cannot do anything right now, shelf it - you will deal with it when it comes time.

^^^^^ This exactly!

While I think the OT/PT and/or nurses who are dealing with them every day (or less frequent when the come home) may have notice things more often and they know the warning signs and make the appropriate reccomendations but the cannot "diagnose" CP. CP is something that is typically diagnosis later on, but there are things you can do now to help with some issues, sometimes....

You can talk to the doc & therapist and ask for reccomendations for exercises or massages that you can do to help improve tone also if they are concerned.

AlwaysSunny925 · January 2012

Not really CP related but I had an experience with a nurse who offerred an opinion that was way off. My son Aiden was intubated for 8 weeks and also had the PDA ligation surgery which carries a risk of vocal chord paralysis. One he was extubated we were worried that he lost his voice for good because when he cried no sound came out. A nurse commented that she thinks his vocal chords are paralyzed and he would need speech therapy to get his voice back. Turns out his vocal chords are fine and they just need time to heal from being intubated so long (which could take a few months).

I know nurses are quick to give their opnions, and I am sometimes guilty of asking them questions I should be asking their doctor or other specialist, but I think that answers about our babies should be given by those that specialize in that specific area. I know the nurses mean well, but sometimes false information (even if well intended) can cause you to worry for no reason or give false hope.

I say leave it to the specialists.

jacque_z · January 2012

I don't know how old your child is but a nurse, a dr., an OT/PT - no one has a crystal ball that can look into your child's future and tell you exactly what they will do or won't do. Ultimately, only time will tell. I think your Dr. is being cautious for good reason. I have a friend whose son has CP - she was told all of these things that he would never do that he is now doing. These medical professionals are just making educated guesses a lot of the time.

Our experience was different in that we had doctors and specialists telling us all these horrible problems our daughter had but yet the nurses and OT/PT were saying 'she acts normal to us; just like every other 26 weeker' and it turned out all the specialists were wrong. She is fine.

So you just never know.

urbanflowerpot · January 2012

AlwaysSunny925:

Not really CP related but I had an experience with a nurse who offerred an opinion that was way off. My son Aiden was intubated for 8 weeks and also had the PDA ligation surgery which carries a risk of vocal chord paralysis. One he was extubated we were worried that he lost his voice for good because when he cried no sound came out. A nurse commented that she thinks his vocal chords are paralyzed and he would need speech therapy to get his voice back. Turns out his vocal chords are fine and they just need time to heal from being intubated so long (which could take a few months).

I know nurses are quick to give their opnions, and I am sometimes guilty of asking them questions I should be asking their doctor or other specialist, but I think that answers about our babies should be given by those that specialize in that specific area. I know the nurses mean well, but sometimes false information (even if well intended) can cause you to worry for no reason or give false hope.

I say leave it to the specialists.

I agree with this completely. I think it's nurses/OT/PT's jobs to offer helpful solutions to things they observe but not plant a seed of panic in your brain. They are NOT doctors. While they may see a lot that isn't their place - I'm fairly certain it's even in their job description to not suggest a diagnosis.

My DS had to return to NICU after being discharged - he'd been home for two weeks. Before leaving the first time they ran a ph probe to be sure he didn't have silent reflux. When he returned he failed, after passing the first time. He'd just needed to get a little bigger for the symptoms to become official. When his nurses heard this I learned that they'd all suspected it. I am glad they never let on to it - I know they were discussing it with the neos in private.

PhoenixRising11 · January 2012

I am a NICU nurse, and it is certainly NOT my job to do any sort of diagnosis, and it is especially not my job to mention anything about such things to a family. My feeling is that it is unprofessional for any nurse to do so. I can report to the doctors and nurse practitioners things that I observe in my patients, but that is it. I did not go to medical school, and I am not an expert in anything except giving nursing care to my patients. What I can do is advocate for my patients and their families, offer general information and support to families, take the best care possible of their precious babies, and work as part of a healthcare team whose sole goal is to get our patients home to their families.

We often get questions from families about how long their babies will be in the NICU or what the side effects of their treatments or conditions might be. While it is okay for me to say, for example, that some babies who have intraventricular hemorrhages may develop symptoms of CP, it is not okay for me to tell you that your specific baby might have CP. First of all, I am not qualified to make that observation, and secondly, a CP diagnosis is never done in the NICU because it is too early in a baby's life for a definitive diagnosis. I never predict a discharge date to a family because every baby is different, and I don't have a crystal ball. It is hard not to be able to offer concrete reassurances to families because of course we want the best possible outcome for our patients, but false reassurance is certainly worse for them in the long run.

If you have concerns about the NICU staff giving you misinformation, it is certainly within your rights to ask to speak to the nurse manager. Nurses should be held accountable to their scope of practice, and the nurse manager could help to reorient the nurses to what those are. I obviously feel strongly about this, as I think this can be a real disservice to families who are already going through the toughest ride of their life. I wish you well on your journey!

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