Just over 6 years ago, we got a very brief introduction to being the parents of a premature baby. Our oldest daughter, Claire, entered this world almost 5 weeks early. For us, parenthood began with a small, but fairly healthy baby. There would be some weeks of worry about slow weight gain and a bout of RSV that landed her in the hospital, but her early arrival wasn’t a concern for long. If you asked me about prematurity back then, I would tell you what I knew — and I thought I knew a few things. What I knew then was only a fraction of what I know now.
On January 17th, 2012, our 1lb 8oz fighter, Charlotte, was born. I was admitted to the hospital 15 days earlier, at 22 weeks and 2 days of pregnancy, and expected to deliver immediately due to incompetent cervix. After meeting with a high risk OB, I was told that I had a 1% chance of making it to the viability point. At the hospital where I would deliver, the rule is to not resuscitate babies prior to 23 weeks. With the help of modern medicine and a draconian position they called Trendelenberg (where your feet are at a 30 degree angle above your head), I was able to stay pregnant until 24 weeks and 3 days. Charlotte was over 15 weeks early and 11 weeks earlier than her sister; she was born and successfully resuscitated right around the point where a little less than 50% of babies survive. That seemed like both a grim and hopeful statistic. What were grim were her chances of having a disability. Everyone from the doctors and nurses treating Charlotte to Dr. Google agreed that her chances of having a moderate to severe disability (such as hearing impairment, blindness, cerebral palsy or other developmental delays) were 60%, if she survived.
The first 9 weeks were touch and go. She relied on a ventilator to stay alive and had new infections every time we turned around. Charlotte spent a total of 156 days in two different NICUs. She came home on more medicines than I can count, plus an apnea monitor and supplemental oxygen to assist her badly damaged lungs. As the parents of a preemie, we quickly learned to change our expectations. I expected to have a natural labor and delivery, then breastfeed. I had a classical C-section under general anesthesia, pumped for months on end, and waited five agonizing weeks to hold her for the first time. I thought I would bring home an 8 or 9 lb. newborn; I brought home a 5-month-old weighing just shy of 7 lbs. I expected days of tummy time and occasional trips to the pediatrician. We got physical therapy, occupational therapy, home health, and a list of specialists’ appointments a mile long. Despite the many expectations that have changed, one expectation has not: the hope we have for our child’s future. Today, Charlotte is a testament to the power of prayer and the miracle of modern medicine. She is a surprisingly healthy, although small, 22 month old. She walks and talks and does all the things we were told not to expect. We are blessed to live in a place where her life is possible and that a reasonably healthy future can happen.
Around the world, many preemies like Charlotte die because they lack access to the medical interventions required to save their lives. Even more frightening is that in some places, babies like Claire, who are much closer to full term, struggle because simple things such as steroid shots to develop their lungs or warmers to maintain body temperature are not available. Thankfully, there are organizations, like the March of Dimes, working to improve research and spread technologies that help babies like Claire and Charlotte survive and thrive.
Prematurity is still one of the leading causes of newborn deaths worldwide, and 75% of those deaths are preventable when simple and inexpensive interventions are available. No parent should have to say good-bye to their child, but during Charlotte’s journey, we saw far too many families experience that pain. So, today, on November 17th, World Prematurity Day, please remember those families who have experienced that loss. Please be thankful for the amazing research done to save preemies, but let’s not forget that the job is not done. More babies can survive and more babies can survive without disability. Let’s celebrate the doctors and nurses who help preemies survive. And of course, let’s celebrate Charlotte and the preemies like her, and the amazing feats of survival they’ve accomplished.
Vickie works full time as a Social Worker and enjoys raising her two daughters with her partner of 11 years, Katie. Claire is a vivacious 6 year old and Charlotte is their 21 month old, miraculous former micro preemie. In addition to a career and family she loves, Vickie enjoys cheering on both her Alma Maters, LSU and Dominican. She was born and raised in the New Orleans area, where she returned in 2002 after completing her Master’s degree at LSU.