A while back, we featured a story about a baby girl nicknamed “Z,” who was born with Down syndrome and two congenital heart defects. In honor of Congenital Heart Defects Awareness Week, we thought we would catch up with Z’s Momma (and occasional MFM guest-contributor) Kelly Nava:
My daughter is nearly two and half years old now, jabbering nearby on the floor, twirling about on her bum and flailing her arms happily with what seems like an endless supply of energy. Just like a toddler should, right? I tell you now – this is not a picture I thought I would get to see. When this little bundle of ceaseless vigor was born, before our midwife gave us her impression that Z had Down syndrome, before we understood the full scope of the physical limitations our baby would face, I recall trying to prompt her to grasp at my finger. The grasping reflex that babies usually tend to have was curiously missing, and despite my coursing adrenaline and the joy of meeting my daughter outside of the womb, I think I registered that something was not quite as it should be in that moment. She did not move about much, then. Her arms and legs splayed out instead of curling in. Curious things that in time grew to be both a worry and an indication of future gross motor delays.
It is more likely that Z’s hypotonia accounted for the lack of reflex and her limpness than the two heart defects we quickly learned that she was born with – it all comes part and parcel with Down syndrome, after all – but when we learned of those defects: a coarctation of the aorta and a complete AV canal, we knew it would be a long process of physical recovery after two tandem surgeries. The first took place when she was about two weeks old, the second at about two months old. Her recovery from each, in terms of the scar healing over, her eating habits, and her general alertness, was relatively quick. However, it is the extended months of contriving stationary amusement for my baby that stays with me. The efforts to coax her to hold her head up during tummy time, and later to sit up on her own. I confess in the beginning, I mourned the delays that were compounded by heart surgeries. It is a terrible and necessary thing, that mourning, and I am torn between accepting how unworthy it was of me and acknowledging that it needed to happen. It was arduous in its own way, but now, in retrospect, hardly a blip on the radar that is my daughter’s joyous life.
Z is still behind a typical child in terms of her gross motor skills, but her muscles are wilted no more. They are agile and elastic and getting stronger every day. Her reflexes are sound – anyone who spends any amount of time with toddlers knows how unwieldy their balance can be. Z is no exception to this now and catches herself with each fall. She holds my finger in her fist; oftentimes my nose or the dogs’ tails as well. She can stand with the aid of Mama or the couch, she can cruise along the coffee table, she can crawl (in her own unique fashion) at alarming speeds, and she can walk across a room holding her Papa’s hand. This child is amazingly unbroken by the congenital heart defects that accompanied her into this world. She is thriving. She is our hero. No amount of time spent worrying over ‘how she would end up’ could have led me to believe that the same child who was all but motionless in my arms is now genuinely too active to hold in them for long. She’s way too busy playing to sit still. Bless her heart.