I will never forget the moment I first held my son in my arms. It seemed like time slowed down after a whirlwind of a day. I looked at his scrunched-up little face in wonder, trying to see who he looked like. I took in the surreal moment and just snuggled up to him, glad to be through with the work of labor. I can say for a fact that I fell in love with him. He was perfect.
It’s hard to describe the next few moments as I held his little hand in mine. My breath caught. His three middle fingers were short and not completely formed. I slowly breathed and prepared myself for the discovery that something was wrong. I looked at Jon, who had been my rock the whole day. I tried to communicate with him without scaring him, but there was so much movement going on in the room that it wasn’t possible. After trying to nurse for the first time unsuccessfully, the nurses took him across the room to weigh and measure him, and I saw them noticing his fingers and taking stock of the rest of him. My biggest fears during pregnancy were being realized, that something had gone wrong and I had no control over it.
After x-rays and ultrasounds and a chromosomal study, we were so grateful to learn that our little boy was as healthy as we hoped he would be. The pediatrician on staff diagnosed it as amniotic band, a condition that restricts growth in utero. There was nothing we could have done to prevent it, and because one of the major complications of amniotic band is miscarriage, we knew we were incredibly blessed.
Fast forward to our move back to California. During his 9-month well baby checkup, we told his new pediatrician about the amniotic band diagnosis and how he had done well with his occupational therapist for six months. She told us she wanted to refer him to an orthopedic surgeon at Shriners Hospital to be sure. I didn’t understand the point, but Jon felt strongly we should do it, so we did. And I am so, so glad.
The wonderful doctor we met with today (whose specialty is the hand – how cool is that?) told us it didn’t appear to be amniotic band at all, but rather something called symbrachydactyly (try to say that five times fast). Right away, this diagnosis made much more sense. For one thing, amniotic band is often diagnosed in utero, and there were no signs of it in any of the many ultrasounds I had (you get a lot of ultrasounds after you go into pre-term labor at 26 weeks). For another, Jack has little nubs with tiny fingernails at the tips of his fingers. Why would those appear if growth had been restricted? By the descriptions I have found online, we now have the correct diagnosis; it’s as clear as day. This condition occurs in one of every 30,000 to 40,000 births. It isn’t genetic, and there are no concerns that his future siblings or children will have it. He’s our unique little boy, but we didn’t need a diagnosis to tell us that.
Let me make it clear here that I have never for one second felt my child was less than whole because of a few short fingers; he has me wrapped around those teeny, tiny fingers of his. But I do worry that no matter what we do to help him know that his self-worth isn’t tied to the size of his hand, someday someone with their own self-image issues will come along and say something to make my son feel incomplete. And that scares me to my core. The thing I have to remember is that if it hadn’t been his hand, it would’ve been (and likely still will be) something else. No parent is immune from this fear. All we can do is try our best to fill our children up with every good thing we can give them and trust that they’ll know what to do with it.
From almost the beginning, I’ve been referring to Jack’s left hand as his “lucky fin,” a reference to Finding Nemo. Imagine my pleasant surprise when my research today guided me directly to luckyfinproject.org. When I saw that search result, my breath caught again, and I cried. From their website:
“Celebrating the wonderfully made one “Lucky Fin” at a time.”
How could you not love that?
The project has three purposes (phrasing pulled directly from their site): First, it creates a support network for parents across the U.S. and around the world. Second, it links parents to medical information and resources. And third, it provides education on limb differences.
You can support the project by making a donation to receive adorable handmade Lucky Fin bracelets or T-shirts. Please stop by their store and consider making a donation. I know I’ll be making one ;) And I would like to publicly declare as a designer that I would love to find some way to participate in this project. If you’re with the Lucky Fin Project and you’d like some new designs, please contact me!
This post appears on Witty & Bright.