When I Learned My Son Has a Heart Condition and a Genetic Condition

To myself, on the day I found out my child has a genetic condition as well as a heart condition:

I see you. Sitting in the cardiac ICU, clutching your 4-day-old baby. I see the line of medical professionals standing just outside your curtain, mindlessly chatting about their lunch plans as they wait their turn.

I see you. Tears. Agony. Fear. Loss. Breathless. Stunned.

What happens next will feel awful and inconsiderate and rude. Those doctors will start to shuffle in, one after the other, and they will each drop more bad news. Things your child won’t do. Ways your child will struggle. Procedures your child will undergo. Years shaved off his already shortened life expectancy. More pieces and parts of the healthy life you thought your child, somehow, might still have, being ripped away. Like a pack of wolves standing over a fresh kill.

You had studied and memorized every aspect of the heart condition your child would be born with. You knew the statistics and the lingo and what to expect and when certain things would happen. You knew the good and the bad inside and out. But now, these doctors are speaking in tongues. Dazed and confused won’t even come close.

But then, a sweet nurse will overhear them. She will shake her head and mutter under her breath about how “this isn’t right.” She will go and find the attending and tell her what they are doing to you. That attending doctor will chase them off. They will run, heads down, tails tucked. Little wolf pups who were scolded by their mother.

I see you as you sit and stare at that perfect bundle of joy, wondering what in the hell just happened? How in the world did you go from three surgeries for a heart condition to “a” through “z” of other complications?

I see that kind doctor come in and try to smooth things over. I see genuine and sincere sympathy in her face. Perhaps she’s had a similar experience? Maybe she’s a mom? She tries to make you feel better. She tries to take away the sting of their words.

I see you later that night, with no one but baby by your side, computer in your lap. I watch as you Google “CHARGE syndrome” or “Dandy-Walker syndrome” or DiGeorge syndrome” or “heterotaxy.” More tears. A look of shock and awe and disbelief. A few seconds later, I can hear the laptop lid slam down and gut-wrenching sobs as you try to wrap your head around the photos of the children you saw. The fear as you imagine your precious newborn baby looking the same way.

What I want you to hear now is it can be OK, and it can get better.

Here’s what I’ve learned since: CHARGE is a genetic condition consisting of a mutation of the seventh gene. Children with CHARGE often have several medical conditions, which can affect their hearing, vision, airways, growth, kidneys and heart. CHARGE is a relatively rare occurrence. It affects 1 in roughly 10,000 births. In my experience, parents can be given the worst-case scenarios for their child when a CHARGE diagnosis is made. Doctors might be afraid to give too much hope to the situation, and so they may choose to err on the side of caution. Fortunately, oftentimes, they can be wrong. I’ve found that many times these children surpass the expectations that are laid out in those first days. This isn’t to say they don’t still have monumental struggles. CHARGE is a harsh reality.

The first year is difficult. I won’t even sugarcoat it. You will have days when you will wonder if you have what it takes. Days when you will question if it would have been better for your child if he had passed away. Days where you will literally spend more time driving to therapies and doctors than you spend with those same people. You will have long days and even longer nights. You will lose friends and family and co-workers who cannot deal with your new reality.

But there will be victories. Celebrations will take on an entirely new level. First words, first time playing with a new toy, first steps, first tastes. You and your baby will have worked harder to achieve those “firsts” then you ever thought possible. The pride you will have in and for your child will make your heart literally burst right out of your chest. You will be that mom who shows videos of what your child has done to complete strangers. Over-sharing will not be a word in your vocabulary.

You will make new friends in the therapists who come into your home. Your Christmas card list will have doctors and nurses who have literally touched your child’s beating heart.

You will learn to live for today — even more so now. Because now it’s not only a heart condition that could take your child, but this other thing, too. Every now and again you’ll venture into the genetic world your child now has dual citizenship in. It’s OK if you can only focus on his heart right now. It’s perfectly acceptable to keep that laptop lid down for a time. Your plate is overflowing, and there are only so many hours in a day. Only so many tears you can shed.

For others getting started along this journey, please don’t let your child’s new diagnosis define them. Don’t put limits on them and what they can achieve. Children are strong and resilient. They adapt and grow and challenge the medical community. These babies are born fighting. Tooth and nail for every single inch.

What I have learned from my son Jackson is that he is the one “in charge.” He sets the pace. He calls the shots. He will accomplish. He will overcome. He will succeed. And his life will have more happiness and joy and love and laughter than I ever thought possible on that awful day in the cardiac ICU. And, I pray, so will yours.

 Image via Contributor.

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