A Tale of Two Limb Differences

June 17, 2019 adopting a boy, Education, Family Stories, IEP, June 2019 Feature - Orthopedic, limb difference, occupational therapy, Orthopedic, radial aplasia, radial club hand 4 Comments

Limb difference was one of the boxes we checked for our first China adoption in 2013. So when we received our son’s file, it was relatively easy to say yes. Our soon-to-be son, at 10 months of age, was the youngest child on the shared list that day.

We were open to a boy or a girl, our youngest was about to turn three and we had checked the limb difference box. It all seemed very straight forward.

The “what in the world did we just say yes to?’ came the next day.

Four months later we were on a plane to China. Our son’s file said: flexion deformity of left wrist and deformity of left thumb. Once we got home we learned all about radial aplasia, also known as radial club hand. Since this limb malformation affects the radius, it affects the thumb side of the hand. Opposition, or a thumb that works, is necessary for gripping objects.

Finding an orthopedic surgeon who specializes in plastic surgery of the hand and upper extremities is critical. We found one literally just down the road at the University of Michigan. Other bones and structures of the forearm, wrist and hand can be affected with this malformation. It can be part of a syndrome and/or might be part of a genetic condition. In our son’s case it is not.

We did not know until we got to China that both of his upper limbs are affected. On his right arm he has a short radius and he had a very little thumb. On his left arm his radius is absent and he had a non-working (hypoplastic) or floating thumb. His left middle finger was also fixed in a 90 degree bent position. We saw the hand specialist not long after we got home but we waited 7 months before the first surgery to give us all time to bond as a family. His first surgery was performed on his right hand to deepen the web spacing between his index finger and his small thumb and a tendon was transferred to his thumb from his ring finger to give him opposition on one hand, a bigger working thumb!

We waited until fall for the second and more complex surgery knowing he would be casted and we wanted to enjoy summer cast free. He was 2 1/2 and had been home 14 months before his second surgery. The second surgery was done on his left arm with the absent radius. This surgery was a three in one procedure. First, the surgeon removed the non-working (hypoplastic) thumb. His left thumb was a hazard or accident waiting to happen as it just dangled there and could have been easily caught in a drawer or door. All of the structures it would have been attached to were also absent and it had no useful purpose. Additionally, wrist centralization was done to put his wrist in a more normal position as there is often that classic club hand curving of the forearm toward the thumb side of the hand. Finally, the surgeon also released the tendon in his middle finger that was fixed in a 90 degree bent position. It is hard to get a bent finger into a pocket or mitten!

He recovered from both of his hand surgeries well. There was lots of casting to protect the surgical site and pins as it healed (and recasting as he liked to wriggle out of his casts at night) and then splinting. I wish I had done a better job of keeping track of the exact number but I think he went thru 8 casts over the three months following surgery and then he graduated to a splint which could be removed for meals and bath time. Five years later he still wears a splint at night and we now see his hand surgeon once a year for x-rays and a new splint which he needs as he grows.

The whole process entailed more than a year of more intense care and treatment, including the two surgeries and recoveries. But, looking back, I can honestly say that now five years later his special need is really a non-issue. He received occupational therapy through our state’s Early On program and that transitioned into occupational therapy though our school system once he turned three.

We were blessed to have the same therapist see him throughout all of this. He graduated from occupational therapy and the need for an IEP by the end of kindergarten because he could do everything everyone else could do including being able to tie his shoes, which most of the other kindergartners couldn’t do! He also happens to be one of those naturally athletic kids and, with his nine digits, he regularly outperforms kids a year older and a head taller both on the field and on the court! Indeed his real “special need” was that he was a boy who needed a family. We are so blessed to be his family and meet that special need daily.

In the midst of all of the surgeries, about a year after coming home, I sent my husband a text and told him I didn’t think we were done. We spent a few months praying about doing it all again and by the time our son was recovering from his second surgery we had signed contracts and began the home study process. Again, we checked the boxes for special needs we were open to.

Things had changed in the China program. Our first adoption was completed with a referral coming from the old shared list. Now the partnerships were in place and our second adoption process took longer than the first had and much longer than we had anticipated. The longer we waited, the more we became certain that we wanted another son with a limb difference. Our first adoption experience allowed us to be open to more significant limb differences. So 3 1/2 years after starting the process we again got on a plan to China in 2018 to bring home a four year old boy with really special hands and feet.

His file said congenital hand and feet malformations and a year later that is still the extent of what we know. We have seen our hand specialist and are not sure if surgical intervention is possible for his special hands. This was hard to hear because our son does not have opposition on either hand and we know how important having one opposable thumb is.

All the time I hear people say kids are resilient and he truly exemplifies this. This ray of sunshine went off to young 5’s this past year and has amazed us all with language acquisition and all he can do. He has an IEP and works with the same occupational therapist who graduated his older brother from services. There are still things he can’t do. Some things he may never be able to do simply because of the way his hands work.

We spend our days focusing on celebrating what he can do and helping him figure out ways to adapt. We have seen the foot specialist. He had surgery on one of his feet to fix some toes that were really a shoe issue because of rubbing. He was casted and non weight bearing for six weeks and was a total trooper.

We have seen genetics and it is likely that our son’s limb differences are part of a genetic syndrome and even if insurance ever does approve chromosomal analysis it actually changes very little for us. We have ruled out any heart or kidney issues that can be present with genetic conditions that affect hands and feet similar to our son’s hands and feet.

Just like his older brother, his real “special need” was that he was a boy who needed a family and again we are so very blessed to be that family and meet that need and his other needs daily.

I am Tanya and my husband Luman and I have five children; Selah 14, Boaz 12, Simeon 9, Shadrach 7 (adopted in 2013) and Meshach 5 (adopted in 2018). You can reach me by email at tanyainkorea@yahoo.com.

4 responses to “A Tale of Two Limb Differences”

  1. Joy Bransford says:

    Wow love this Tanya! Privileged to hear your story.. xxx

  2. Pam says:

    What a gift your children are for you and everyone who knows them! They look so happy! I can’t think of a better mom than you! ( I know Lyman plays a huge part in the gathering , I just don’t know him). I thought of you this weekend as I enjoyed coffee out of the FireWorks yellow mug you made for me. You are always in my heart!
    Pam Lundgren

  3. Luman says:

    Love you – what a special woman you are!

  4. Mayme Mcgowan says:

    Thanks for sharing. My daughter Emma has limb differences in all 4 extremities. She’s an amazing kid. You have a lovely family. God bless.

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