The what is becoming known by now....Tom is having surgery. Word is spreading. People are praying. God has been preparing us for and leading us to this operation for a very long time now.
But many of you reading don't know why and are, understandably, wondering.
Tom was born with a birth defect known as Amniotic Band Syndrome. Amniotic banding occurs in all countries, in all populations. In the USA, when a baby is born with banding, a surgical plan is devised soon after birth with surgeries usually beginning around age 1 and being completed around age 2.
In India, when a baby is born with banding, he is often thrown away.
As my (sometimes) keen little memory goes, I remember the exact converation where Hoffbeast and I discussed Amniotic Band Syndrome and talked about whether or not we would mark "yes" on our special needs openness form during the adoption process. I said that, well, I wasn't sure; amniotic banding seemed like kind of a big deal and I didn't know if I was up for it. My husband said something to the effect of, "So what if she's missing a hand?" and my mind rushed back to the little girl who had lived in our apartment complex in Colorado that summer. She, in fact, was missing a hand, likely due to amniotic banding, and she was precious beyond measure.
He was right. It wouldn't be that big of a deal. At least, not big enough of a deal for us to say no. We would confidently mark "yes" on that one (at least, as confidently as you possibly can when walking by faith and filling out that awful form).
Two short days after checking that box, we first saw the face of our baby Tom. We saw his face in a full-length shot, his feet in a blurry photograph, and then clear as day, we saw the teeny tiny hands of our baby boy. They were banded, and we had specifically been asked to consider his referral because of his special need.
Amniotic banding occurs when there is a tear in the amniotic wall. Tiny protene fibers break away from the amniotic lining, float around in utero, and often end up wrapping around the baby. If the tear occurs early in the pregnancy, a miscarriage can often occur because the baby simply can't develop. But if it occurs when the limbs are developing, the baby will often be born a congenital amputee. If it occurs later in the pregnancy when the digits are developing, the baby can have fusion in the finger/toe bones and/or webbing on the hands and feet.
The protene fibers literally wrap around part of the baby's body and become a part of the growing skin. That would be fine except that the fibers ("bands") are not elastic, so the skin can't grow, and overall growth of the affected part of the body is stunted.
(Please keep in mind that I am not a doctor; I only play one on my blog.)
Tom has banding on all four limbs. So while he functions just fine in most areas at this point, there are things that he simply will not be able to do in the future. As our surgeon put it, "He'll never be a concert pianist, but he should be allowed to try." That was one of the most precious statements the man could possibly have made, and he said it in an email way back when we were reviewing Tom's referral information.
And I agree. Right now, the only thing he can't do is hold up his hand and say that he is two years old. Or make a peace sign. (I'm exagerating...there are other things that he has trouble with, namely things that require tight grip for small movement, like zipping. But for the most part, he astounds us with his ability to function in spite of his disability.)
But someday, he will want to play the violin. As it is now, that would not be possible, as the three middle fingers on his left hand are joined at the tips. After the surgery, however, he should be able to do that--and many, many other things. He loves Rex's violin, and he already has told us that he wants to play it someday!
On Friday, Tom will be having surgery on both of his hands and on his right foot. Next time around, the plan is to have the second surgery on his right hand and also to operate on his left foot and ankle. We are hoping for only two surgeries, but we will have to wait and see what the future holds. Our surgeon feels pretty confident about the surgery and the likely outcome, so we are grateful and are hopeful about how the procedure and follow-up will go.
Thank you to everyone for your many prayers and kind words....we are thankful for so many who love and care about our sweet, happy, giggly little Tom. I will try to send out a specific prayer request list tomorrow evening before bed...until then, goodnight.
But many of you reading don't know why and are, understandably, wondering.
Tom was born with a birth defect known as Amniotic Band Syndrome. Amniotic banding occurs in all countries, in all populations. In the USA, when a baby is born with banding, a surgical plan is devised soon after birth with surgeries usually beginning around age 1 and being completed around age 2.
In India, when a baby is born with banding, he is often thrown away.
As my (sometimes) keen little memory goes, I remember the exact converation where Hoffbeast and I discussed Amniotic Band Syndrome and talked about whether or not we would mark "yes" on our special needs openness form during the adoption process. I said that, well, I wasn't sure; amniotic banding seemed like kind of a big deal and I didn't know if I was up for it. My husband said something to the effect of, "So what if she's missing a hand?" and my mind rushed back to the little girl who had lived in our apartment complex in Colorado that summer. She, in fact, was missing a hand, likely due to amniotic banding, and she was precious beyond measure.
He was right. It wouldn't be that big of a deal. At least, not big enough of a deal for us to say no. We would confidently mark "yes" on that one (at least, as confidently as you possibly can when walking by faith and filling out that awful form).
Two short days after checking that box, we first saw the face of our baby Tom. We saw his face in a full-length shot, his feet in a blurry photograph, and then clear as day, we saw the teeny tiny hands of our baby boy. They were banded, and we had specifically been asked to consider his referral because of his special need.
Amniotic banding occurs when there is a tear in the amniotic wall. Tiny protene fibers break away from the amniotic lining, float around in utero, and often end up wrapping around the baby. If the tear occurs early in the pregnancy, a miscarriage can often occur because the baby simply can't develop. But if it occurs when the limbs are developing, the baby will often be born a congenital amputee. If it occurs later in the pregnancy when the digits are developing, the baby can have fusion in the finger/toe bones and/or webbing on the hands and feet.
The protene fibers literally wrap around part of the baby's body and become a part of the growing skin. That would be fine except that the fibers ("bands") are not elastic, so the skin can't grow, and overall growth of the affected part of the body is stunted.
(Please keep in mind that I am not a doctor; I only play one on my blog.)
Tom has banding on all four limbs. So while he functions just fine in most areas at this point, there are things that he simply will not be able to do in the future. As our surgeon put it, "He'll never be a concert pianist, but he should be allowed to try." That was one of the most precious statements the man could possibly have made, and he said it in an email way back when we were reviewing Tom's referral information.
And I agree. Right now, the only thing he can't do is hold up his hand and say that he is two years old. Or make a peace sign. (I'm exagerating...there are other things that he has trouble with, namely things that require tight grip for small movement, like zipping. But for the most part, he astounds us with his ability to function in spite of his disability.)
But someday, he will want to play the violin. As it is now, that would not be possible, as the three middle fingers on his left hand are joined at the tips. After the surgery, however, he should be able to do that--and many, many other things. He loves Rex's violin, and he already has told us that he wants to play it someday!
On Friday, Tom will be having surgery on both of his hands and on his right foot. Next time around, the plan is to have the second surgery on his right hand and also to operate on his left foot and ankle. We are hoping for only two surgeries, but we will have to wait and see what the future holds. Our surgeon feels pretty confident about the surgery and the likely outcome, so we are grateful and are hopeful about how the procedure and follow-up will go.
Thank you to everyone for your many prayers and kind words....we are thankful for so many who love and care about our sweet, happy, giggly little Tom. I will try to send out a specific prayer request list tomorrow evening before bed...until then, goodnight.
3 comments:
explained very well, thank you, love the Drs statement and your willingness to give him all the tools you can, yet appreciating the way that God has made JT!
First, I have to say that I love the doctor's comment too. Caring doctors and nurses always makes all the difference. Second, I have to mention that I was given the link to your blog from Rachel Valencia. My husband and I have just begun the adoption process in India with America World, and I am soaking up every single word. I'm so appreciative of your experience, your explanations, and perspective on the entire process.
Auburn, I'm so excited for you about starting the process with America World! :) Way back in 2009, we started with AWAA, hoping to be a pilot family for their new India program. In fact, we mailed our application to them ON THE DAY OUR SON WAS BORN, it turns out. Isn't God amazing?!? A few months later, just after filling out our special needs list about our openness, we found out about our son. His referral was through a different agency, so we had to make the hard decision to leave AWAA. Ryan Hanlon was awesome--he is one of the heroes in our son's story, because he encouraged us to go for it and to trust that God would raise up other families to be pilot families....I had felt so committed to the process that I really needed that reassurance. Years later, we are here (and I'm still hoping that we could adopt through AWAA one day!), and you are a pilot family--reading my blog!! :) Do you have a blog or some way that I could keep up on your story? Do you know Brittnie? She and her hubby ar ethe first family using AWAA for an Indian adoption, and they leave on Sunday to meet their daughter!!!!!
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