Before I was Samantha and Annebelle’s mom, I was Hayden’s mom. Nobody calls me Hayden’s mom anymore, and the only place they know me as that is at Kosair Children’s Hospital. That’s because Hayden was born with a rare syndrome that impaired his immune system and left him with a severe heart defect. DiGeorge Syndrome. I feel like I was young when he was born; I was 28. It was 1994. He was born and diagnosed, and there was no time to research, no internet – I just went from doctor to doctor with him and followed their plans, did what they said.
I distinctly remember sitting across from the heart surgeon, who said we could take Hayden home for a few months, let him grow, and then we needed to bring him in for heart surgery. “Shouldn’t we address his immune system first?” I asked. “No,” he said, there was basically nothing to do for his immune system, and they needed to get moving on the heart problem.
So we did it. At the start of October, we handed him over for surgery. Then he moved into the pediatric ICU for 4 months, where he continually fought infections, underwent more surgeries and tried out every available piece of medical technology as we tried to keep him with us. But his battle ended on February 12th.
The reason I’m writing about this is because Hayden is always on my mind, and because he paved the way for his sisters, one of whom has now been diagnosed with Type 1 diabetes. I think of all the nights I have gone to sleep wishing he were here with these girls, helping them along. And I know he’s done his part. He taught me so much, so quickly.
Sometimes I google “DiGeorge Syndrome” to see what’s going on with the treatment now. At Duke University, they are successfully performing thymus transplants and DiGeorge patients are living. Duke is focusing on fixing the immune system before attacking the heart problem.
Medical science is always advancing. I have to believe in it. In 10 years, things can change radically. And what is 10 years but the blink of an eye when we’re talking about our children’s lives? I can see the leaps and bounds made in diabetes care just by glancing over the history since the introduction of insulin in the 1920s.
And as we start this battle with Samantha, I’m asking questions and I’m not going to sit around an nod my head at the “answers.” There are things we can try. She has some options in front of her. And she’s going to benefit from research that will radically change the treatment of diabetes. She’s even paving the way for the future by participating in the Defend-2 clinical trial.
When doctors say they think there will be a cure in 10 years or even 5 years, I think they have reason to believe it.