Hand to Hold's Official Blog: Written by Parents for Parents

Six Tips to Choose the Best Specialists for Your Preemie

Photo by Simone D. McCourtie / World Bank - available through CC BY-NC-ND 2.0

Simone D. McCourtie / World Bank

When your micro preemie gets discharged from the NICU, you are, of course, overjoyed. You look forward to having some quiet time at home to get to know your baby, and yet, you soon realize that you may be out of the house more often than you’d like. Along with those prized discharge papers, you will likely be getting a lengthy list of specialist referrals. All babies need to have a pediatrician lined up upon discharge, but depending on your child’s NICU course, he or she will need follow-up by several other specialists as well. We were discharged with appointments scheduled with a Pulmonologist, an eye doctor (Retinologist), a Nephrologist, a Cardiologist, and a Developmental Pediatrician. Soon, we added a Gastroenterologist (GI).

You might see some of your specialists through a High Risk Infant Follow-up Clinic. Find out more about this unique post-NICU coordinated care model that is sometimes available for NICU graduates.

At first, the appointments come fast and furious, and it is scary to be exposing your fragile baby to so many waiting room germs. Scheduling is a challenge in and of itself, having to work around the baby’s feeding and sleep schedule.  I know I felt like going to the doctor was a full-time job, on top of my full-time job. Slowly, we shed some specialists (Eye doctor, Pulmonologist, Developmental Pediatrician), added others, and switched some that were not working out. Four years later, I feel qualified to offer some advice to those starting out in the specialist journey.

  • Try to get some advice before you leave the NICU. We trusted and valued the opinion of our Nurse Practitioner, who told us what specialists we should continue seeing at the hospital, and when we should find someone closer to home.
  • Make sure the specialists you select have experience caring for preemies, and that they and everyone in their office knows your baby is a recent NICU graduate. Request, when possible, to be shown to an exam room as soon as you arrive, especially if it is during flu or RSV season.
  • You are not obligated to continue care with the specialists who saw your baby in the NICU. I know that some people live in areas with only one major hospital with pediatric specialists, but if you have the luxury of choice, and are not happy with a specialist, you are allowed to find a new one. No hard feelings. Your baby’s care should be your priority. We found a new eye doctor to follow my daughter until the risk of ROP had passed. We also hopped around until we found a GI who took Daphne’s persistent reflux seriously.
  • When selecting a specialist, especially if your child is likely to continue needing that specialty for a while, think of the accessibility of the office, waiting time in the waiting room, and how office staff deal with insurance claims. You want the best specialist for your child, but if seeing the Top Doc means you will have to climb stairs with your car seat, oxygen tanks and monitors, wait two hours each time, and spend half your life on the phone dealing with insurance claims, maybe it is worth reconsidering.
  • Try to select specialists who are responsive – to your child, to you, to your pediatrician, and to other specialists. It is important for a specialist to know that your child is under the care of other doctors for different conditions. She needs to be aware that her decisions may impact another doctor’s course of treatment. Your life will be a lot easier if your doctor is willing to call or email a colleague to make sure everyone is on the same page. Remember: your child is a human being, a person, not a set of lungs, kidneys, a heart, a gut and a brain. Believe it or not, all those organs have to work together, and specialists should as well.
  • Speaking of guts, trust your own. If something doesn’t seem right, if you get a bad feeling from a specialist, ask around. Other preemie parents are a fantastic resource for specialist recommendations, as are most pediatricians and even Early Intervention therapists.

What specialists did your child need after the NICU? Please feel free to share your tips in the comments below.

Melissa Haber About Melissa Haber

Melissa Haber (NY) is mother to Daphne, a surviving identical twin who was born at 27 weeks 4 days, moments after sister Leah passed away. Daphne was in the NICU for five long months, and had open-heart surgery to repair a congenital heart defect when she was six months old. At three years old, she continues to battle kidney disease and other delays related to her prematurity. Daphne is proud to have the greatest big sister in the world, six-year-old Lucy. The family lives outside of New York City. Melissa blogs regularly about life with a former micropreemie, parenting challenges, and loss and grieving. You can also follow her on Twitter.

Comments

  1. Agreed! I would add not to hesitate to get a second opinion if it is affordable to you. Many specialists will give general opinions over the phone or e-mail if a second opinion requires lengthy travel. One phone call sold us on our current urologist- within an hour he responded to our email inquiry, spoke with me at length for over an hour, and his experience/knowledge (which had led us to him in the first place) sealed the deal. He is over 1,000 miles away but the only one who had answers. We also changed our local urologist to one who worked better with the specialists we loved locally so they could work as a team in providing care for our son.

  2. My twins endured a lot during their 5 1/2 month NICU stay. Luckily we only see the pedi, GI and surgeon. We still are waiting to see the developmental pedi. We did see a pedi for a few months post discharge. The doctor was good, but her nurse/ma was not. I got a bad feeling about her from the first visit. We have since changed pedis. I strongly suggest going with your gut feelings. We, after all, are the ones who know our children best!

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