Used To Be

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.

I truly feel for you. What a Terribe experience. Losing a Child is the worst. I’m sure that Hayden is watching over his Sisters. That’s Good that your Daughter is participating in the research. The New Pioneers. :slight_smile:

Thank you for your post. I cannot imagine what you went through with Hayden. I am hopeful as well about eventually finding a cure. Treatment has changed radically for PWDs and your daughter is lucky to have a mom like you. So much of having this disease when you are a child, I think is filtered by how a parent leads by example, as you do. I was five when I was diagnosed, and I am 55 now. My doctor always jokes with me, and says, you have to thank your parents, look at how well you are doing now. The connect is the first five years after diagnosis, and how that affects PWDs later in life.

I really liked your post, and I’m very sorry about your loss.

So sorry about your loss but I think it’s GREAT that your daughter will help out in reashearch more and someday…

God bless you. Your post is a reminder that there are worse health issues than Type 1 diabetes. Your little angel is looking over you and his sisters. I do believe in a cure, I believe it is years away though. How many years, no one knows. I wish you and your children good health in the meantime.

Thank you for sharing Hayden’s story with us. I do believe he is the “guardian angel” watching over your daughters. Your perspective is definitely molded by your unfortunate bout with Hayden’s syndrome. Yes, T-1 is difficult, but it is certainly a livable condition for Samantha. Best of luck to Samantha in her Defend-2 clinical trials.

I am so sorry for your loss. My eldest sister lost an infant son, Bryan, thirty years ago and we all still love him and miss him and wonder, “What if…”

Hayden lives on in you and your family, and his spirit is with God. That’s what I believe.

He also lives on in the lessons he taught to his medical team – they were all educated and informed by him, whether they ever said so or not. Each patient makes their medical team better at helping others. I know this because when I was in my late teens (thirty-five years ago) I worked in nursing homes and I still think about my patients all the time, all these many decades later, especially one lady who taught me all about the challenges of post-stroke aphasia, with her heroic patience and bright, shining eyes.

Huge hugs for you and for Hayden.

I am glad you had Hayden to love, even though his life was short. You were enriched by his presence, and he stays with you as long as you remember him. Please take the sweet memories and review them every time you miss him so much – even if for a short time, he was and is your joy.
I’m sure Samantha will do fine – it’s obvious that she has a mother who dearly loves her children and will do everything in her power to take good care of them!

Great post. It’s tough to read stories like that and I can’t imagine what it was like going though it. You have a great outlook on life.

Dear Samantha, Annebelle and Hayden’s mom…
First of all let me say how very very sorry I am to read of the loss of your dear little boy.
Know that Hayden is also in your daughters. He is not gone. I know that’s not the same as having him at arm’s length, but it’s comforting to know that he is and will always still be part of your family :heart:
Love and hugs…linda xxxxxx