Crystal’s Story (Complex Bilateral Syndactyly)

Because my husband, his dad, his uncle, and granddad had complex syndactyly, we knew that our son, Rivers, would likely have it as well. Before trying to conceive, we spoke to a geneticist who advised it was a 50-50 chance: our child would either get my husband’s copy of the gene or my copy. But no one in my husband’s family had been born without it, so we just expected it. Sure enough, when we were finally expecting after 10 years of marriage, the doctor mentioned during the ultrasound that it did not appear that all the digits were moving independently.

My son was a hard-fought victory in himself, being the result of IVF due to my 100% blocked fallopian tubes. I wasn’t that worried about syndactyly because my husband and his family had been very successful and not held back in any discernible way. My one concern was having to think about future surgeries.

When Rivers was born, he was diagnosed with complex bilateral syndactyly. On both hands, the middle and ring fingers were fused and had extra and missing bones, and the joints were non-functioning. At seven months, Rivers had his first surgery to separate the joined fingers. Because of his young age, we were able to do the surgery on both hands at the same time. After the first 24 hours, he handled it perfectly- almost as though he didn’t even notice. He had an additional surgery at 17 months to straighten his ring fingers which stick out. That surgery was unsuccessful and after interviewing several surgeons in several states, we’ve chosen another and will have two additional surgeries this year. Now that he’s almost three and much more aware and active, we will do one hand at a time.

As with any kid with syndactyly, Rivers can do anything and is not held back in any way. His hand therapist was greatly impressed by him and actually stopped seeing him because he didn’t need her. Rivers hangs on the bar at playsets, plays his guitar, colors, and anything else he sets his mind to. We’re proud parents!