Mom Shares the Moving Story of Her Daughter Who Was Diagnosed With Apert Syndrome
"Was it my fault somehow? Did I cause my baby’s fingers and toes to be fused? No."
A mom named Tricia Brusk is inspiring parents everywhere with her essay on Love What Matters. The Michigan mom of two recently took to the site to share the story of her daughter Amelia who was born just over three years ago—on August 12, 2016—and soon thereafter diagnosed with a genetic bone disorder called Apert Syndrome.
Amelia was born during a speedy delivery, 19 months after her older sister Jocelyn. Brusk recalls, "The doctor immediately placed Amelia on my chest like he would any other baby." That's when her husband Joel Brusk examined their daughter's fingers. "I remember him asking, ‘What’s wrong with her fingers?’" she wrote. "I checked them out and thought, ‘They do look strange, but they’re perfect.’ Then, he examined her toes and exclaimed, ‘What’s wrong with her toes?!’ At that point, the doctor yelled to the staff to get the NICU team in as soon as possible. They came in so fast and took Amelia away from me that we could hardly get a picture."
Brusk says she doesn't remember exactly what happened next except that Joel Googled the syndrome based on her appearance, and she was left in the delivery room. "No husband," Brusk wrote. "No baby. I asked for a Diet Coke. They only had Diet Pepsi."
For five days following Amelia's birth, the baby girl and her parents were in the NICU "meeting what would soon become what our craniofacial doctor explained as a ‘family’ of physicians and learning everything we could about Apert Syndrome."
The genetic disorder is characterized by the premature fusion of certain skull bones (craniosynostosis), according to the National Institutes of Health. The early fusion inhibits the skull from growing normally and affects a child's head and face shape. At the same time, it can cause a varied number of fingers and toes to be fused together.
Brusk explained, "In short, Apert Syndrome is premature fusion of bones. It has nothing to do with medication or actions taken while pregnant which I was so scared it was. Was it my fault somehow? Did I cause my baby’s fingers and toes to be fused? No. We became active in the Facebook community of Apert Syndrome and created Amelia’s Adventure with Apert Syndrome (her personal page). Then, we went home."
Brusk shared that in the months that followed, the family averaged "four to six per week between different doctors and therapies." They did "scans and x-rays, tests and blood draws, all while trying to adjust to our new life at home with two small children. Amelia had a cleft palate, so she couldn't breastfeed, so I was exclusively pumping to provide nutrition for my new baby. This was a daunting task while watching the kids, navigating appointments, and dealing with the feelings that come with being surprised with a child born with a rare syndrome." For self-care, Brusk said she saw a therapist.
Then, on January 9, 2017, Amelia had the first of nine surgeries she has had in the past three years. "She had a frontal orbital advancement, where they took off a part of her skull (her forehead), reshaped it, and put it back on," Brusk explained. "Her first surgery was about 6 hours long and left a zig-zag scar across her head."
Several months later, on May 31, 2017, she had an operation called syndactyly release to separate her fingers. "This way she would be able to hold and grip things," Brusk shared. "She would be more functional. To do this, it must be done in stages. The first stage is to separate the pinky from the ring finger and the pointer finger from the middle finger. Our wonderful physicians here in town did that for us, and we went home that same day."
The next syndactyly release was done in June 2018. Surgeries three through seven included cleft palate repair, ear tubes, more skull, and tear duct stents, and surgery number eight took place in Boston.
"We did a lot of research and had to do a lot of insurance hoop-jumping to get there, but we went through another long surgery that ended up with our dear girl in four large purple casts on her limbs," Brusk noted. "We stayed overnight one night after her operation and then drove for 13 hours straight to get home that next day. Having casts on each limb didn’t slow Amelia down. We put baby leggings on her casts and stuck markers in them so she could still color, and she learned to walk with casts on her legs! Once the casts were removed there was no stopping her."
Brusk explained that this fall, her youngest daughter will start preschool. "I’m nervous," she wrote. "I see how other kids look at her in the park. I know her face, fingers and toes look different."
At the same time, the mom of two is "excited" about her baby's next chapter. "I see how her personality shines bright and how she can make friends with just about anyone," Brusk noted. "I see how she sticks up for herself already and doesn’t let her differences stop her from being her. She has a lot more surgeries to overcome. She has a lot more stares to ignore."
Amelia is undoubtedly one brave, strong little girl. Her mom deserves a pat on the back, as well. After all, her fierce love will fuel her daughter's fight and ability to light up the life of everyone she meets.