By Nadine Briggs
On the day that I became a mom, my daughter, Megan, was born after an uneventful pregnancy. As she entered this world, she did not cry as is expected when a newborn takes her first gulps of air. My daughter was not able to breathe on her own at birth and had a blueish and alarming color to her skin.
Crowds of people entered the birthing room and surrounded her in an attempt to diagnose why she was having difficulty breathing and to provide oxygen to her lungs. My increasing louder question of “what’s wrong with my baby?” was not immediately answered. This was not the birth experience that I had envisioned. Within 20 minutes, the nurse told us that Megan most likely had Down syndrome, a genetic difference where she has an extra chromosome hard-wired into her whole being, resulting in global developmental delays. Megan was brought to our bedside for a quick kiss on the cheek and then taken away. We were not able to hold her at that time because she needed immediate medical attention. She was brought to the neonatal intensive care unit known as the NICU.
I had a very limited knowledge about Down syndrome and certainly had no understanding what it meant for her life and ours as a family. As I processed the news over the next several hours, my husband and I learned that the reason why she was not able to breathe on her own was due to a very serious heart defect. She had two very large holes in her heart that if not repaired, would be fatal. She was going to need open heart surgery at some point prior to her first birthday. Her medical state was so delicate that a common cold would likely result in death.
Our goal as her parents from that point on was laser-focused. She needed to grow strong enough to endure heart surgery. Her heart was defective to the point where at rest, it was pumping as though she were running a marathon. She could not sustain this level of effort for the long term. She needed to gain weight and strength. Despite our efforts to teach her how to drink from a bottle so we could increase the caloric intake with formula, at 3 1/2 months old, Megan was in failure-to-thrive and had open heart surgery to repair the holes. Thankfully, the surgery was a success and she began to thrive and grow.
As these events unfolded within the first few months as a mom, I began to change. I was thrown into motherhood in a way that I could never have anticipated. I began to grasp medical terms, learned to ask questions, take the time to process the answers and then ask them again if needed. I learned sign language, more acronyms than I care to mention and how to advocate as a mom. Clumsily at first, I’m sure, but I learned. I learned and I grew along with Megan. I made a ton of mistakes and probably cried just as many happy tears as I did sad ones. On this Mother’s Day, I can look back and see that this journey has shaped us all and for that, I am truly grateful.
