COVID-19 Is Rattling The Nerves Of Preemie Parents Everywhere

As I write this, hand sanitizers, disinfecting wipes, gloves, and masks are sold out everywhere in the panic over COVID-19. People are writing about increased anxiety, and mental health professionals cite a massive surge in requests for help. Go anywhere, and it is not unusual to see people wearing personal protective equipment. Welcome to my world 16 years ago when my daughter was born prematurely at 30 weeks’ gestation at 2 lbs. 15.5 oz. Only we were not fighting COVID-19. We were worried about all illnesses, some more than others.

With her early birth, Becky ushered in a sense of urgency like no other to keep her healthy. The reason? Unlike a full-term infant, her immune system was non-existent. Fighting a small cold could kill her. Visualize a “baby in a bubble,” and you can imagine my growing sense of dread. For us preemie parents, it is not just these deadly novel coronaviruses to worry about – it’s every illness.

Dr. Huntington, my daughter’s neonatologist in the Neonatal Intensive Care Unit (NICU), was honest with us, “We have to keep her from getting sick, especially from Respiratory Syncytial Virus or RSV.” She looked at me as I turned pale. “I know what RSV is,” I replied. She was surprised because RSV is not widely known in the general public. I continued, “I had two close friends with children that got RSV, but they were both full-term babies and got really, really sick. What can we do?” Thankfully the doctor assured me that they would take good care of my daughter and that there was a special injection she would receive monthly to help her avoid RSV. I was relieved, but I knew that we had to still be extra careful with keeping ourselves and those around us healthy.

Our regimen at the hospital included scrubbing up to our elbows like we were preparing for surgery. Once clean, we then had to grab a hospital gown to wear over our clothing. Early on, we wore face masks, and we were told not to touch anything else while there, and if we did, we had to go back to scrubbing up again.

Once I was discharged from the hospital, and as my husband Gregg and I bawled our way home in the car, we worried about our daughter and felt so utterly lost. At home and anywhere else we went beyond the NICU, I became completely freakish about hand washing and making sure we brought no illness to our daughter. Even as I spent time in our bedroom pumping breastmilk around the clock, I obsessively cleaned the pump parts afterward.

Then we had Hurricane Isabel blow through our area, knocking out power throughout the region and affecting the water supply. Thankfully we only had a brown-out early on while I was pumping, and I yelled at the ceiling, “Oh no, you don’t!” The lights instantly came on again, and we never lost power after that (my husband to this day says that God fears a lactating mother). As great as that was, we still had to deal with the boil alert. At the NICU, I assumed they would be fully prepared for this. Nope. “Wash your hands and then use hand sanitizer. That’s the best we can do,” said one nurse. I was stunned. At home, I followed the same protocol. I was a mess and worried that this would be the scenario that would get our daughter fatally ill.

Thirty-eight days after her birth, our little Becky, now 5 lbs. 8 oz, came home with a team of specialists, a set of medications, oxygen tanks, and a heart monitor. Walking our daughter around the house required a sherpa, joked my husband. He was right. Our daughter’s medical equipment outweighed her by 3x. I prepared with immense precision on making sure a pump of hand sanitizer was at each sink and on the table in the front hall. The few visitors that we had were put through a full washing regimen after being quizzed about their health, whether they smoked, etc. People thought I was a bit loony.

Well, I wasn’t. I was right. We kept Becky healthy that year, but the following year she no longer qualified for those injections and got a cold. When it appeared to finally clear up, a persistent cough continued. That resulted in endless pediatrician visits, and the very same day that Becky qualified for special pediatric therapy due to her premature birth was the same day she was diagnosed with Reactive Airway Disease, also known as asthma.

With every cold she gets, I hear that cough, and the inhaler usually calms everything down. But with each respiratory illness, I wonder if this is going to be the one that requires a visit to the emergency room or worse, an ambulance. Even 16 years out and after some pretty scary illnesses, one of which was being speculated as pneumonia, I still have this concern, albeit with less intensity.

With COVID-19, all of those memories have come flooding back. It is as if I am back in the NICU staring at that tiny infant and worried that she would get sick. Only now I have to pull myself out of that horrific daydream and stare at my teenager and pray that she will get through this. I am not alone in this. Parents of premature babies worldwide and some of whom had children on the very edge of viability are absolutely terrified. I also worry about the parents in the NICU now. I worry about the preemies that are now teens, young adults, adults, and in the elderly years. Each of them has at least one underlying health condition that can turn COVID-19 into a severe and yes, fatal case.

To health responders and the health care professionals on the front end: I hear you on the seriousness of this illness. Thank you for guiding us on the challenges with COVID-19. You have us parents of vulnerable children and your former tiny patients backing up your concerns completely. To the general public heeding that concern to #stayhome and do the right thing by the young and the old and the immunocompromised, again, we are grateful. You are all our heroes.

Deb Discenza is co-author of the Preemie Parent’s Survival Guide to the NICU and founder, PreemieWorld.

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