When our twin boys were born at 24 weeks gestation, we knew we had a long road ahead of us. As each day passed, we learned more and more about the NICU and that our stay would be much more complicated than just watching our baby grow. While it is everyone’s hope that their child’s NICU stay is smooth and uneventful, we found our survivor twin, Joseph, being faced with numerous complications and multiple diagnoses. Some of these diagnoses, such as diabetes insipidus, were short lived (it was determined that Joseph’s case on diabetes insipidus was Lasix induced and was resolved when his medication was changed). Many of his diagnoses such as Auditory Neuropathy, Chronic Lung Disease, Hypothyroidism, and Short Bowel Syndrome still remain with him five years later.
If you find your child being faced with a medical diagnosis while in the NICU, here are some tips I learned while gaining more knowledge about the new diagnosis:
Don’t Google the diagnosis.
While turning to your smartphone or computer, going to Google, and entering the name of the diagnosis is incredibly tempting, don’t do it. The first information you are likely to find is not always pleasant. It might be painted with doom and gloom and your child’s condition could be the complete opposite. The first site to pop up may not be reputable and you could find yourself reading information that doesn’t relate to your child. The information could be old or untrue. Being new to a diagnosis, you may have a tough time deciding which piece of information is true and which is false. Google can be scary.
We are five years out from many of our son’s diagnoses and now, I do turn to Google sometimes. I also did my initial research from reputable sources not on the internet and am able to distinguish between information that is true, information that is old, and information that is just wrong. Once educated about your child’s diagnosis, Google can be your friend.
Ask the nurse what questions you should ask the doctor/specialist.
Chances are you have gotten to know your nurses quite well and you see them more frequently than the doctors and specialists. If you are unsure of questions to ask the doctor, ask your nurse. Write them down. If needed, ask the nurse to be there for support when you meet with the doctor. I promise – your nurse will not think you are crazy for asking them for questions to ask. In fact, they will think the complete opposite. You are the parent. You are your child’s number one advocate. You need to be as educated as possible about the diagnosis so you know how best to help your child. We did this on numerous occasions and it provided such peace of mind when talking to the specialist.
Visit the hospital library (if there is one).
Our son was diagnosed with Auditory Neuropathy Spectrum Disorder (ANSD – a form of hearing loss) about six and a half months into our NICU stay. The ENT came to visit within a few hours of the Audiologist diagnosing Joseph. After talking with him for a long time about the diagnosis and what it meant for Joseph and our family, he told us to visit the hospital library and they could help us find reputable information. I knew the children’s hospital had a library for checking out books and movies but I had no idea they could help with locating information of this nature (at least I had never thought about it before). We had been at this hospital for a couple of months and this was the first time this had been suggested to us.
As soon as the ENT left, I made my way to the hospital library. I told the employee that our son had just been diagnosed with ANSD and the ENT suggested I visit the library. She immediately got a sheet of paper and wrote down my son’s name, room number, doctor, and diagnosis. She said she would put together some information for us and bring it to Joseph’s room.
When my husband and I returned from dinner that night, sitting in a chair in Joseph’s room was a binder full of information about ANSD. Some was information the hospital had on file and some was printed from online resources (refer to my first tip – someone with more knowledge than I had at the time did the Google work and only gave us reputable and up to date information). There was also information for local and state resources for children with hearing loss. The binder proved to be invaluable in our early days raising a child with hearing loss.
Ask the nurse or social worker for local support groups and and/or resources.
If you hospital does not have a library (our first NICU hospital did not), ask the nurse or social worker if they can recommend resources and any local (or state) support groups for the diagnosis.
Joseph was diagnosed with chronic lung disease while still in the NICU at the birth hospital (which did not have a library). I remember the doctor giving us the diagnosis and as soon as she left the room, the nurse looked at us and said, “Do not get on your phone to find information about this. I’ll be right back with a book.” She brought back a reputable book about chronic lung disease that she left with us to read. She also gave us suggestions for online resources related to chronic lung disease. There was comfort in knowing the information she was giving us was current, reputable, and reliable.
Social workers and nurses are wonderful resources for connection with with local and state groups related to the medical diagnosis. Some may also be able to recommend reputable online groups as well.
Ask the NICU staff if they can connect you with a family with the same diagnosis
There is a real probability that you are not the first person in the NICU to experience this diagnosis (depending on the diagnosis and size of NICU, you might be the first). If it is something you are interested in, ask the nurse or social worker if there is a family you might be able to connect with who has the same diagnosis. Sometimes, when a diagnosis is new, there is comfort in talking with someone who has walked the journey before you. They may be able to offer suggestions and give advice.
Some people do not want to meet with other families who have the same diagnosis and that is okay. I was one of those people in the early days of our NICU journey. I enjoyed when the nurses and doctors told us stories of former patients (without using names, of course) who had experienced a similar journey to ours. Once we were out of the hospital and life had settled a little, I was okay with talking with other families who had the same or similar diagnoses and experiences as ours.
It is my sincere hope that you find yourself having a rather uneventful NICU journey and that you are able to watch your baby grow and thrive. However, if you do find yourself faced with a new diagnosis, I hope the above tips will provide some guidance and encouragement as you learn how to best advocate for your child.