On April 22nd, 2020, in the midst of a very confusing time we were blessed with a beautiful baby girl. Clarissa was born with GERD and her feedings were tough. We started noticing she wasn’t meeting her milestones; she never crawled and took her first steps at 3 months shy of her 2nd birthday. With the help of early intervention, we got her the help she needed. She is diagnosed with anxiety, sensory processing disorder and hypotonia and we like to think of it as life’s way of preparing us for what was to come.
On June 30th, 2021, I went in for an anatomy scan of my second pregnancy. We were excited to find out the gender of our baby. We never expected to leave that parking lot in tears and fear of what our future would look like.
Veronica was diagnosed with Spina Bifida through that ultrasound, she has lipomyelomeningocele, which is a fatty mass that affects a child’s spine. It usually is a large lump under the skin that attaches to the spinal cord and pulls on it. Instead of floating freely in the spinal canal, the spinal cord becomes tethered or attached to the fatty mass. If not treated it can cause nerve damage or loss of function like the ability to walk or control bladder and bowel.
Veronica had her first spinal surgery at 3 months old where her neurosurgeon was able to de-tether her spinal cord 95%. We went home and a month later she had to go back in for a second surgery because of a spinal fluid leak. She contracted bacterial meningitis through the wound on her back and was hospitalized for 2 months where they placed a central line to provide her with antibiotics. For 2 months we lived in a hospital room where we had plenty of snuggles and cry sessions. Meanwhile Clarissa was home with Dad. A memory I will never forget is asking a nurse to watch my baby Veronica in the ICU while I walked out into the parking lot to watch my other baby blow out her birthday candles for her 2nd birthday. We would alternate every few days, but it was never an ideal situation.
Because of the location of her lipoma on her spine she has no function of her left leg below the knee. With that being said Veronica was able to learn how to crawl around the appropriate age range and can out crawl anyone I know. She was later diagnosed with hip dysplasia from not having enough hip muscles to hold her femur in place, but she did not let that stop her from walking, at 18 months old she used a walker to get around and quickly mastered it. With the help of her orthotics braces and her determination she now uses forearm crutches and even takes steps independently. We spend 3 days a week doing physical therapy to get her as
strong as she can be.
Our future still holds many uncertainties, but we have learned to take life a task at a time. Although Veronica will need more surgeries in the future for her spine and hips, we are certain that her willpower will get her wherever she needs to go. Nothing could have fully prepared us to do what we are doing now but it sure helps that we were used to strangers asking why Clarissa wasn’t walking yet and we were familiar with early intervention and therapy services.
We feel honored to be selected by the Shannon Daley Memorial Fund, it is such a beautiful feeling to be recognized along with other families for doing the best we can with what we go through.