On the Street Where You Live

This past week I’ve spoken a lot about Katie, sometimes I wonder if I’ve said a little too much. I’ve been asked, both online and in real life, if maybe I’m paying just a little too much attention? It’s not really a surprise, as I thought about it myself.

I’ve never met Katie or her parents. All I have learned about them, I’ve read on their website. It’s been a hard thing to try to follow the recent news about her, because it hits so close to home. Katie is five months old – the same age I was when I had my first heart surgery.  She’s had the Bi-Directional Glenn; I’ve had the original version of that operation. Katie is at Yale New Haven Hospital, where Dr. William Glenn himself lived and worked. I’ve read that Dr. Glenn, despite being a world famous heart surgeon, would leave his home on Saturday mornings and walk to Yale’s football field to cheer on the home team. He sounds like my kinda guy.

Katie has Hypoplastic Left Heart Syndrome (HLHS). I have Tricuspid Atresia, which is occasionally referred to as one of the defects that make up Hypoplastic RIGHT Heart Syndrome. (HRHS) The term HRHS wasn’t even invented when I was born (I don’t think anyone had thought of HLHS, either) so I’ve always just referred to myself as having Tricuspid Atresia. But when you think about it, Katie’s heart and mine are nearly mirror images of each other.

Spooky. As the title of this post notes, it hits you on the street where you live.

After my surgery at Johns Hopkins in 1967, one of the doctors mentioned in passing that we were one of only two families who had made it in that night. The other child had been born premature, and despite being healthy in every other respect, hadn’t made it. The doctor shook his head. “Some children…they just aren’t fighters.”

There’s no doubt about it, little Katie is a fighter. She’s hanging on for all she’s worth, clawing and spitting and digging her nails in. Keep fighting, Katie! I’m pulling for you!

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3 Responses to “On the Street Where You Live”

  1. Hollie Says:

    Steve,
    I don’t think that you’re paying too much attention to Katie. I’m a firm believer in the power of numbers. The more people that are aware, and can send out positive energy and/or prayers in her behalf will make a difference. Watching Katie’s struggle feels like I’m watching Elaina all over again, and watching her parents walk the path that I had to walk. She went through so many similar struggles. When my daughter almost lost her battle after her Bi-directional Glenn, it was the support and encouragement of others, especially other CHD families, that helped me through the crisis. Knowing that I wasn’t the only person praying for my child’s survival helped immensely. Had you not mentioned Katie on your blog, I would not be aware and be able to send my prayers and thoughts to her family. The CHD family is large and we all need support from each other. I appreciate all that you do. The information and support you provide are very valuable. It gives me hope as a mother, to know that there are adult CHDers living full lives. I thank you for that hope. I didn’t mean to write a novel, but I’ve wanted to leave you a comment for some time, and to let you know how much I admire what you do!
    Heart Hugs,
    Hollie – mom to:
    Elaina 9 mo; TOF, pulmonary atresia, VSD, pulmonary hypertension; post Glenn

  2. Jenn Fleming Says:

    Hi Steve!

    I saw your note on our blog. I’m Jenn, Corey’s mom, and as you’ve doubtless heard before from other parents of heart children, your story gives me great hope. Thank you for writing, and I’d love it if you’d email me some time.

    Our hospital is Hopkins, too, by the way. Luca Vricella is our surgeon. I love that guy!

    Jenn

  3. katiemanning Says:

    Steve,

    We appreciate your thoughts and prayers. To know that people care so much is humbling. Katie has just had another very difficult day and it’s success stories such as yourself that keeps us believing that there is light at the end of the tunnel, however faint it may be!

    Keep caring, keep spreading awareness!

    -Alan

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