It was 2004. I remember that year vividly and not just because of the Hurricanes. I remember 2004 because it was the year my husband and I got the exciting news that our 1 year old son, our son who had taken us 8 years of struggles to have, was going to be a big brother…to twins! We were on cloud 9.
Seventeen weeks into the pregnancy we went to find out the gender of our unborn twins. Within minutes of learning we were having a boy and a girl, we learned news that changed our lives forever. We were told that our unborn son had Chiari II Brain Malformation and water on the brain, called Hydrocephalus. We learned the little feet we had just seen on the ultrasound were clubbed and that the nerves of his Spinal Cord were exposed and that would mean he would have paralysis, bladder and bowel issues and likely countless other medical challenges. It was Spina Bifida and our unborn son had the most serious type of this birth defect that a baby can have and still live.
I reached out to organizations I heard were good for families with children with a disability but was turned away because as middle class citizens, our income was too high to qualify for services. It was when Andrew was 2 months old, that I got a phone call from The Howard Phillips Center’s Developmental Center for Infants & Children. The hospital had referred our family and because of the Spina Bifida diagnosis, we qualified for services. Their expert team taught us how to hold him to help his hip sockets, they showed us stretches to help his little body, and they incorporated the siblings into their sessions and used them as motivators for Andrew. Early Steps was a blessing to our family.
In elementary school, Andrew shared a classroom, a spot on the cheerleading squad and a part in show choir with his twin sister. Andrew also plays basketball and baseball with the help of a wheelchair. Our family will forever be grateful to The Howard Phillips Center’s Developmental Center for Infants & Children for pointing our compass in the right direction for success.