Robert and Peter are 7 year old twins living in Michigan with Beckwith Wiedemann Syndrome.
5 years ago the twins had surgical procedures to have their tongues reduced in Ann Arbor, but the surgeries were not a success.
Dr. Marsh in St Louis, a leading specialist in the field of BWS saw pictures of the twins and offered to do a second surgery on them. We were thrilled because this would help out so much with their speech and possibly prevent some of the orthodontic work that we expected. Their surgery is scheduled for August 13, 2014 in St. Louis.
But, there is always a catch. The twins' father is finishing nursing school right now and as a result does not yet have a job. Their mother (me) is working like crazy, but it is just barely enough to squeak by until we can become a 2 income family again. It allows us to buy our groceries and keep a roof over our heads, but it doesn't give us any wiggle room when it comes to traveling to St Louis, finding places to eat and stay while there, or child care for the twins' little sister who will be staying home with Daddy while we are gone.
And if that was all we needed, well life would be grand. But, our insurance isn't sure if they will cover the surgery at all. (Since it is the second surgery, they wanted second opinions. We live in a very rural part of the country so finding a properly qualified specialist that our insurance is willing to take the advice from is rather difficult.) So, we have to also start preparing in case they insist on steep co-pays or just bill up for the whole darned thing!
Our insurance company did in fact decline the surgery today. We are now facing the fact that the surgery will have to be paid for out of pocket.
What is Beckwith Wiedemann Syndrome? It is one of the most common over-growth conditions that affect infants in the world. Both the twins have it and so does their mother. Please click here to read more about it!
Why do the twins need surgery? They were born with definite macroglossia. When they were 2 years old they had a surgery but it did not end well. This is what their tongues look like today:
Why not have the surgery locally or wait? Basically, I got burned the first time by taking a more local option. I don't want to do this third time. And, waiting isn't an option. Dr. Marsh is planning on retiring next year. It's now or never. And watching the twins be bullied and teased for their speech or funny looking tongues is so incredibly painful. I remember that from my own childhood. (I wasn't able to have a tongue reduction until I was 20!) I want to prevent it for them if I can.
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-The Nelson Family.