Before Scarlett was born she learned to be a fighter. We were stunned to find out we were having twins, but even more stunned when we found out there was a problem with one of the babies, and she would need surgery after she was born. We were even more devastated during our ultrasounds when the doctor told us he didn’t think Scarlett would survive the pregnancy. She had a birth defect called an omphalocele, where her liver and intestines were outside of her body. The scares continued when I was hospitalized for pre-eclampsia and I had to deliver the girls 7 1/2 weeks early. Two baby girls, Audrey and Scarlett were born. Scarlett surprised the doctors and she survived! Scarlett was whisked away to Nationwide Children’s where she spent her first 52 days of life. Scarlett had surgery at 9 months old to repair her omphalocele. Unfortunately Scarlett’s birth defect didn’t turn out to be her only medical problem. She has Midaortic Syndrome, which is a narrowing of her aorta in her abdomen, and she has renal artery stenosis, which is a narrowing of her arteries leading to her kidneys. These conditions are extremely rare in children and cause her to have high blood pressure. Scarlett will need a major surgery in the future.
The challenges kept coming when we noticed differences in how Scarlett was developing compared to her sister. When Audrey started talking, Scarlett didn’t have any words and she couldn’t communicate in gestures either. After a misdiagnosis at age 2, at age 3 1/2 Scarlett was diagnosed with Autism Spectrum Disorder with cognitive and language impairment needing level three supports. Level three is the most severe on the spectrum and we frantically researched everything we could on Autism and getting Scarlett all the therapies she needed.
Recently Scarlett slowly stopped eating as much and eventually stopped eating and drinking completely. After spending a couple weeks at the hospital, we discovered that Scarlett does have some problems with her small intestine. She recently had a nasal gastric tube placed to give her nutrition. The biggest challenge of Scarlett being nonverbal is that she can’t tell us what is wrong or what hurts. Because of the trauma of the hospital stays and having the tube placed, Scarlett has not made any progress with her feeding therapy.
We hope that a service dog for Scarlett will provide her with a source of calmness and comfort and ease her anxiety. A service dog can also help Scarlett stay safe since she has a tendency to wander. When Scarlett is frustrated she has meltdowns where she can throw herself on the floor. Our hope is that a service dog can help her calm down faster. Scarlett lives with her loving sister and her parents who are all dog lovers and we believe a service dog can make a big difference for Scarlett. Thank you for taking the time to learn about Scarlett.