Mom fights to give son born with rare deformity a chance at normalcy
TACOMA (KCPQ) -– A local Mom is fighting to give her baby boy a chance at a normal life, after he was born with a rare deformity.
As a parent you have to make hard decisions for your children all the time, none possibly as hard as the decision Miranda Bethay has made.
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Christopher Bethay is a happy vibrant 9 month old in the 97th percentile of growth. He's standing up on his own. He's already got 4 teeth! But Christopher will always be different.
"I asked does my baby have 10 fingers and 10 toes?' And nobody said anything," Chrsitopher's Mom Miranda Bethay explained from their Tacoma home.
Christopher has one finger on each hand. Two toes on one foot and three on the other.
See photos of Christopher and his mother:
"I look around and I see everybody's children with all of the digits intact and I just wonder why Christopher had to be that one in 1 million that was born like this," Bethay explained.
The rare congenial deformity called ectrodactyly is a spontaneous mutation of a few genes during pregnancy. Christopher's particular variation is about one and one million there are very few people in the world that have just the one finger on each hand due to ectrodactyly. But Mom says don't feel sorry for Christopher, who does everything a normal baby does, just in his own way.
"He crawls, he pulls himself up and curls finger around things almost like an elephant trunk," Bethay describes.
For Miranda - the most difficult part is going out in public.
"We get a lot of stares and sometimes questions. I actually had a girl in Walmart try to take a picture of him," she adds solemnly.
It's not the misguided curiosity of strangers, but the need to improve Christopher's quality of life that has led Miranda to choose an invasive surgery for her son. Over the next three years, Christopher will fly across the county and endure nearly a dozen different procedures. Bone will be transplanted from his toes – and placed on his hand - giving Christopher an additional finger on each hand. All four of his limbs will be in cast for six weeks.
"His hands will be cast at 90 degree angles. He'll be pretty much immobile during that 6 week period while he's healing," Bethay explained.
The temporary pain is worth it through the eyes of a mom who wants to give her son a sense of normalcy.
"This is going to give him more function and assistance for daily living. I think it's worth it for us to go and do this for him," Bethay said confidently.
Christopher had his first successful surger on Februaru 8th but here's a long road ahead for this little boy. You can donate to Christopher's Go-Fund-Me account here.