“It’s like you’re planning a trip to Italy, and you end up in Holland. It’s very different, but so incredibly beautiful.”
That’s what a very sweet, Physican’s Assistant told this teary-eyed mamma the other day. And I smiled…
Last week we were told that the 20 week sonogram of our little boy showed several anomalies. A missing fibula bone in his right let. Little toes that weren’t seen. Everything else looked great, perfect, they said. I wasn’t sure what the “missing bone” all meant, but something sounded very wrong, and the news shocked us… A Level II sonogram was scheduled.
That evening, my brain swirling, and trying to figure out what this meant for our boy, and for us, I googled, “babies born without a fibula bone”. I was stunned that it’s actually a thing! Fibular Hemimilia–affects about 1 in 40,000. The more we read, the less scary it sounded, with lots of positive success stories. Of course we still hoped for happier news at the next scan, hoped that they just saw wrong the first time. I mean, 1 in 40,000 babies?! What are the odds?
But as we sat in the dim sonogram room the other day, and were told that no, there is still no fibula bone, and as my large stomach was poked and prodded over and over in hopes of seeing a right foot with little toes, our hope for a physical miracle slipped away… We talked with a specialist. An older woman who seemed a bit mystified by our little boy. There is nothing in our genetics, nothing that could have been done differently as far as early development in the womb, it’s all just so random, and a freak thing…
Or is it?
We looked at pictures of the scan with her. His heart, brain, all his other little limbs fully formed and looking strong. “These are beautiful” she said.
We moved on down to see his leg, a little bowed, and without the aid of the fibula, his foot, and toes, aren’t growing like normal. “I’m pretty sure there will be prosthetics in your son’s future” the Dr said.
We planned another sonogram for a month later, and will meet with a genetic counselor then to figure out what step to take next. If everything continues to go well with my pregnancy, and this little man keeps looking happy and healthy, his condition shouldn’t affect anything about labor and delivery, and even the first year of his life.
Entering the medical world of specialists and orthopedic surgeons looks huge to us, but how thankful we are for the care and guidance we’ve already received, and have faith that with our Great Healer in control, it’s only the start of a grand adventure we had no idea was in store for us!
Our prayer for this precious child, is that:
- Some day he can walk and run! Abe prays this every night.
- That he’s born a strong, strapping little boy with a fierce zeal for life :).
- That we as a family will grow stronger together, and in our faith thru any challenges that arise.
- That above all, God’s name will be glorified and exalted.
A freak thing? I think not. God has known from the beginning of time that He had something special, a little out of the box, for this boy. And we are beyond excited to meet him, and walk this journey with him.
Also, someday being able to tell him that God decided to leave his fibula out, and will keep it safe until we get to heaven, will be pretty special we think:)
I decided to share this news with you, our friends and family, in hopes to clarify our situation. I have thought so much lately about other devastating tragedies that families are going through, of much more life-altering health conditions that children are diagnosed with, and our son’s health condition looks so minor compared to all that. We have huge hopes our little boy with live a very normal life, just with a different leg. I just wanted you to be able to hear the news from us, and maybe this will help “keep the story straight” so to speak:).
Whatever you are facing today, may you be strengthened with this:
“We know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28