I prayed for a child — and got one sooner than I expected. After all, my husband and I had really only “tried” for one month before I needed to take a pregnancy test. I crept into the bathroom, fully expecting to see a negative symbol glaring back at me, spotted the positive sign, and froze. I was pregnant.
Five months later, the car pulsed with excitement on our drive to the medical center to have the anatomy sonogram done on our fetus. The technician began the exam, but her abrupt stop startled me and ripped me from my innocence. “There’s a problem,” she said calmly. She walked out of the room with our happiness crushing under each step she took. I instinctively grabbed my belly and turned toward John, my husband.
A few minutes and a lifetime later, a doctor entered and resumed the exam with intensity and purpose. My chest was tight. My breath held. My brain finally started to process the situation very slowly: there-is-something-wrong-with-the-baby. Each part of that thought was like a hammer hitting my heart. John and I were watching my baby kick his legs on the monitor when my doctor said three words that changed our lives forever: “Cardiac Anomaly. Terminate.”
My son had a congenital heart defect. Specifically, a double inlet left ventricle. The doctor suggested we terminate the pregnancy.
But doctors’ minds work in numbers, facts, and statistics. From their point of view, these were the facts (which I learned over the course of the next year):
Fact: I am young enough to have other children, so terminate this “defective” one.
Fact: Congenital heart disease affects 1 in 100 children in the United States, making CHD the primary killer of babies.
Fact: The oldest single ventricle patients who received the Fontan, a series of three open-heart surgeries, are only now in their late 30s, making their futures uncertain at best.
But I had a few facts of my own:
Fact: Babies are resilient.
Fact: A mother’s love is an undeniable, indestructible force. Telling a mother to terminate her child is the same as ripping her heart out of her chest and leaving her trembling on the floor — empty and lifeless.
Fact: Children with defects can live lives filled with joy, love, success, and all other normal emotions and experiences.
After one very long week, my husband and I decided not to terminate the pregnancy. We went through genetic testing and an amniocentesis to rule out Down syndrome and other disorders. Our son only had a congenital heart defect. For us, the choice was clear: fight for his life.
We spent the following weeks becoming amateur cardiologists, researching the diagnosis until our eyes bled. To treat Aidan’s heart defect, he would have to go through the Fontan surgeries and procedures. Arming ourselves with knowledge was crucial to obtaining the best care, and after weeks of phone calls and meetings, we were able to find the best hospital, surgeon, and pediatric cardiologist for our son.
Then came the real test: the birth and his first two surgeries. I was induced, and two days and one Cesarean section later, Aidan James Crowley was born, weighing 7.13 lbs. and measuring 21½ inches long (a very good size for a baby who would have his first open-heart surgery at four days old).
I didn’t get to see Aidan, who was immediately transferred to the Neonatal Intensive Care Unit, until the next day. I remember the moment I first saw him as if it happened in slow motion: I leaned over the glass wall of his NICU and whispered into the smallest ears that mommy was here, that mommy loves you, and that everything was going to be okay. As my quivering fingers touched his cheek, his tiny, right arm reached up toward my tear-soaked face. The NICU seemed to vanish, and Aidan and I were all that were left — eyes locked — reaching out for one another. A love so pure never existed.
So far, Aidan has successfully undergone the first two procedures of Fontan: the Norwood and the Glenn. His perseverance is truly extraordinary. The doctors told us to expect him to be in the NICU for six to eight weeks after his birth, but he was discharged on his tenth day. And after his second heart surgery, Aidan was discharged from the hospital, again, on the tenth day. I often think back to those kicking legs on the monitor a year ago and sigh a breath of relief that I knew, even then, he was a fighter.
You can only imagine the anxiety and fear that takes over a parent’s body during their child’s surgery. Those hours will always feel like the longest of our lives. And while it still makes me ill to think of going through another surgery (the last Fontan procedure), in 2014, for now, the tough times are over. Reflecting on this past year overwhelms me. The pregnancy, the birth, the surgeries. I still cry — fearing for Aidan’s future. I worry that his heart will become tired and overworked when he’s in his thirties. I fear lying in a hospital bed with him, as an adult, and hearing him ask me why I chose to have him if I knew this could happen. I pray every night that my son outlives me. And although he has done phenomenally well, the thought of his future sufferings and uncertain life weighs heavy on my heart.
But every day I remind myself of his strength, which he shows me on a daily basis. Aidan is a happy baby; I hear his laughter all day long. And because he doesn’t look sick, I am able to live temporarily in denial. I have started to sing while driving again. I have stopped crying in the shower. I dance while cooking dinner.
Today Aidan is nine months old and 25 pounds of courage. He is the greatest gift I’ve ever received. People have said to me that Aidan’s smile has opened their hearts. His prayer page on Facebook has over 5,000 fans, all of who truly care about him. They comment on how he’s changed their perspective on life.
I advise pregnant women not to think of the anatomy sonogram as the day they find out the sex of their baby, but instead, as the day to count heart chambers, fingers, toes, etc. When a baby is born with an undetected congenital heart defect, pulse oximetry can detect a potential problem by testing the level of oxygen in the blood. Currently it is not the law to test newborns before they are discharged, but many organizations raising CHD awareness are desperately trying to make this test mandatory in every hospital in the country. Early detection saves lives.
There has never been even one second when I’ve regretted the decision to have my son. Children like Aidan might be more difficult to raise, but the rewards are endless. Many people look for heroes in the outside world; I’ve given birth to mine.