Isolated hemihyperplasia (Overgrowth Syndrome)

Dean was born with two toes that are larger than the rest. When he was in the NICU the nurses asked who had the long toes and my husband likes to say it was me. We didn’t think much of it until his 6-month check up when his pediatrician brought it up.

After lots of different doctors and genetic test, Dean has been put into the umbrella category of overgrowth syndromes. Isolated hemihyperplasia is an abnormality of cell growth leading to asymmetric overgrowth of one or more parts of the body. Deans is in his right leg and foot.

So what does this mean? He gets ultrasounds every 3 months, with a blood draw to look at his tumor markers. We then mee with his oncologist to discuss the findings. Early on the doctors found masses in his lungs which led to his first MRI.