Caleigh Rae Jackson

I learned at my 10-week ultrasound that my husband and I would be blessed with having twins. When I returned to the doctor’s office at 29 weeks, I laid on the table to receive a routine ultrasound. The ultrasound tech seemed a bit different and almost eerie in her silence while looking at the screen. She told me that I had an excessive amount of fluid around baby #2 (who was my baby girl Caleigh). Because I was 29-weeks pregnant with twins, my doctor admitted me to the hospital, and I was monitored by the maternal-fetal medicine specialists for approximately two weeks. All of the invasive fetal tests came back inconclusive, including my amniocentesis. I was sent home after that two weeks, to be on bed rest going forward.

I delivered Caleigh at 37 weeks and 1 day – pretty good for a mom of twins. Carter Grant, born 6lbs. 6oz., came first, beautiful and healthy. About a minute later, Caleigh was delivered into the world with her fingers and toes fused together. Within moments, the nurse practitioner brought Caleigh over in an isolette bed and said she was taking her to the NICU. On day three, several doctors walked in and said that they believed Caleigh was having small seizures and they wanted to monitor her more closely. I finished the doctor’s sentence and said “and you are sending her to Cardinal Glennon?” The doctor said, “Yes.” It was then when it hit me – and for several days, I cried and prayed. However sending her to Cardinal Glennon was one of the hardest but best decisions of our lives. The nurses provided exceptional care and were always present with our family during this time to meet all of our needs.

Caleigh spent 1 1/2 weeks in the NICU. Upon discharge, she was scheduled to see several specialists including a plastic surgeon, orthopedic surgeon, neurologist, cardiologist and a genetics specialist. We spent countless hours at appointments for the next several months. We started physical therapy and occupational therapy at home. Then we got a call from the genetics specialist when Caleigh was about 4 months….and she was diagnosed with Apert syndrome (AS). Apert syndrome is a genetic disorder that causes abnormal development of the skull, face, hands and feet. The defective gene in babies with AS allows the skull bones to fuse together prematurely, a process called craniosynostosis. The brain continues to grow inside the abnormal skull, putting pressure on the bones in the skull and face. The fusion of the skull bones, as it affects the brain, can also disrupt intellectual development. Cognitive abilities in children with AS range from normal to mild or moderate intellectual disabilities. Apert syndrome affects an estimated 1 in 65,000 to 88,000 newborns.

Our family started Rae of Sunshine Foundation to raise awareness about Apert syndrome in honor of Caleigh Rae. She is now 4 years old and she enjoys running to keep up with her brothers, singing and dancing, and enjoying playing with her friends at school. She is super amazing and she wows our family each and every day. Caleigh Rae is a loving very thoughtful child and we adore her. I am so thankful for all that Cardinal Glennon has done for our family, and for all the care they provide to children. When we walk into the hospital we feel at home and are treated as family members!