Something wasn’t right.
I wasn’t getting bigger. Doesn’t your belly get really big in the final weeks of pregnancy?
In my 35th week of pregnancy with my first son, I just had a strange sense something wasn’t right. I was blessed to have Dr. Elizabeth Pernal as my obstetrician. When many doctors would’ve simply brushed me off as there was no physical manifestation of this anomaly, Dr. Pernal said simply, “Let’s get it checked out.” And there I was back in the specialist’s office with the warm sonogram belly jelly applied to my pregnant belly. It was hard to see but something was abnormal with the heart. It wasn’t visible in the 22 week ultrasound, yet, we were being sent from that appointment to have a fetal echocardiogram at Johns Hopkins.
Something wasn’t right.
A week later, we would learn our unborn son likely had Coarctation of the Aorta (COA) a congenital heart defect that affects 4 out of 10,000 births according to the CDC. To oversimplify, if you think of the aorta as a garden hose – Austin had a kink in his hose. Technically, he had a narrowing in 2 places of his heart just to make it interesting. We would spend the last 2 weeks of my pregnancy in Baltimore, MD so we would we close to the surgeons at Johns Hopkins when he was born.
I also learned after looking to the left and right of me at pediatric intensive care unit during our first 3 week stay that if you had to have a heart defect this is the one you want to have. It can be corrected surgically and with a very high level of success. You see Austin had a plumbing problem and Dr. RIngel and Dr. Vricella fixed his delicate tiny plumbing. In fact, his heart surgery was the day after Christmas 2004. No one gets out of an experience like this easy . So after a handful of complications including a case of necrotizing entercolitis, another emergency surgery and an infant with a colostomy bag, we were discharged.
This experience taught me a great deal. First, most things are out of your control. I could only research what I could, pick competent medical professionals and pray for God to guide their skilled hands to fix my baby. And if that lesson didn’t marinate, God sent me that emergency surgery with the perforated colon and free air in the abdomen for added measure. Second, a momma committed to breastfeeding a heart baby can pump anywhere and I mean anywhere! Third, it can always be worse. A walk down the hall of Hopkins will quickly give you a dose on perspective. Finally, healthy infants are sent home with parents worried sick if they will stop breathing in the middle of the night. I got through those early weeks with him on monitors – I’d have an alarm if he stopped breathing.
What was most interesting was how this experience, I believe, shaped the heart of my son. Literally, they cut the subclavian vein of his left arm to rebuild his aorta but I am talking more in the figurative sense. He came into this world fighting. He was poked, prodded, intubated, cut, sutured. He didn’t eat for the first 3 weeks of his life.
And he survived.
As a young boy, I watched him develop this fighting spirit. He can be anything he wants to be, however, he has the grit of a litigator – pick a side that kid can argue it. He will try to persuade you in a variety of ways to get what the wants – he is relentless. As a sales professional, I am proud and fascinated with his ability to overcome objections. I secretly hold out hope for him to be an insanely good sales person with a passion for risk management. No pressure. He could also have his own taco stand along a dusty road in Costa Rica. Whatever fills his heart with contentment and brings him joy – that is my wish for him.
He is all in – whatever it may be: soccer, skateboarding, surfing, video editing, fully immersing himself in a foreign country – in London he wanted us to speak in British accents and in Costa Rica he went out of his way to speak Spanish to all the locals. He is strong-willed yet cautious. He fought too hard to live. To tank out doing something silly that would be a waste. He is self- preserving and resourceful. He will send his little brother to test the waters to see if they have enough speed to make the jump.
Today, he is eleven. His fighting spirit is evolving into the amazing territory of the boundary pushing, self-expressing tween and it is awesome. He plays soccer, skates, surf and runs 5Ks – FAST! I’ll admit there are times when I worry and play the movie if his face gets purple (after a 2hour soccer practice) I am still reminded of how blessed we are when I see the scars on his growing body. We are signed up for a lifetime of annual cardiology visits and have a clean bill of health – no restrictions. Early intervention and amazing medical treatment from the docs at Hopkins made him well.
Thank you to the still small voice in my heart and the physician who listened.
