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The 14 week ultrasound confirmed an abnormality with our little boy’s lower legs. He appeared to have femurs, the upper part of the leg but it was unknown as to what was really happening. They referred us to Children’s Hospital Boston where we were seen the very next week. At 15 weeks pregnant, the ultrasound technician was quite infuriated by our vivacious mover. She grunted and huffed under her breath about trying to get pictures and them just being blurs because he was moving SO much. That just served to increase my heart rate, probably making baby boy squirm even more. It was the first parenting moment my husband and I had, both wanting to put the little baby in a time out for being naughty and not cooperating with the lady. We came back to Children’s Hospital later that week and met with Dr. Kasser, pediatric orthopedic surgeon and his team to discuss the ultrasound findings.

Our little boy was diagnosed with Bilateral Fibular Hemimelia, the absence of the fibula bone in both of his lower legs. His right leg had what appeared to be simply a ‘nub’ and his left leg had a foot but it was oriented differently and did not have 5 rays, or toes. They reviewed probable treatment options but were quick to conclude he’d have to have xrays and ultrasounds when he finally made an appearance for a definitive diagnosis. The probable treatment options were either: bilateral lower limb amputations at 6-8 months old and bilateral prosthetics or multiple reconstructive surgeries to his left leg and a prosthetic to the right. Not quite the journey to mommyhood this momma-to-be had long dreamed of. Leaving that appointment, we were buoyed by Dr. Kasser’s optimism and kindness and my husband’s light-hearted jesting about how our kid would have extender legs and be the best basketball player on the block.  Some rays of light were beginning to shine through.