You know that feeling when you’ve just left the NICU after a long day, your cell phone rings, and you recognize that the number is the NICU?
My husband and I had just returned home from the hospital. I knew my son was scheduled for a follow-up cardiology exam because of a heart murmur, but since so many preemies have PDAs, I really wasn’t concerned.
The NICU nurse on the other end of the line told me that the cardiologist wanted to speak with me, and before I knew what had happened, I had a diagnosis. And it wasn’t a PDA. I had no idea if it was life-threatening or what J’s prognosis was. I was shell-shocked and nearly speechless. As I stumbled through my questions, I realized quickly that I was getting nowhere because the pediatric cardiologist had no interest in speaking with me. So, I asked her if she was writing a report to go in J’s records. Her answer?
“Yes, I’ll write a report, but you won’t understand it.”
She was so condescending that I’m pretty sure steam actually shot out of my ears. It was all I could do to grit my teeth and tell her she would have to speak with my husband before I hurled the phone toward him. I knew then that follow-up appointments with this doctor would not be a possibility for me. I was going to have to find another specialist.
Preemies often have lengthy hospitalizations, follow-up care with specialists, and early intervention that expose them to a range of individuals, and sometimes a change in care must be made in the best interest of your child. The first place I suggest looking is within the same practice. A doctor might have a partner with a personality or mindset that is a better fit for you and for your family, but the transition doesn’t require moving medical records or finding a new practice.
If you need a second opinion, you may need to widen your search to another doctor’s office. When I need to locate a specialist, I start by asking our pediatrician, our therapists, and any other trusted people in the medical field for their recommendations. You could also contact local preemie support groups or other preemie parents in your area for suggestions or just talk to other parents in your community who might have tips on good doctors. Once I have a recommendation, I do an online search to learn more about that person before I make an appointment. Don’t forget to check with your insurance company to make sure a new doctor is covered.
If I cannot get a recommendation from someone I know, I do an online search for doctors in my area. I make my decision based on where a doctor is located, what information I find online about that person, and whether my insurance will cover a visit. Remember to take any medical records that might shed light on your child’s health with you to your first appointment.
I feel very strongly that our role as parents of preemies demands that we be advocates for our children. Never be afraid to ask questions and to seek answers, even if that means finding a new doctor or asking for a second opinion. In the case of our son’s pediatric cardiologist, she had a partner in her practice who we continue to see. I found that he was her opposite; in fact, he is so forthcoming with information that he always encourages my husband and me to watch the image of my son’s heart on his computer screen so that he can explain exactly what he sees.
If you have any other tips or suggestions on getting second opinions or finding new doctors, please feel free to share them!