By Elisabeth Myrick
Photography by Elisabeth Nixon Photography
For most expectant parents, early ultrasounds are a formality.
Baby is growing on schedule? Check.
And the most pressing question for many parents: is there any clue to the gender? Ha!
Then there’s the “routine” bloodwork.
However, for Mariah Garces, her 12-week blood test turned out to be anything but “routine” or normal.
“My doctor called to follow up a few days later and warned me that my tests came back positive for Spina Bifida,” Mariah explains. “It was the first time I heard the words ‘I’m sorry’ associated with my pregnancy and baby.”
Devastated, Mariah recalls spending the next two days crying and wondering what life would be like for her daughter, if she survived.
After subsequent testing and, ultimately an amniocentesis, the diagnosis of spina bifida with “no other defects” was confirmed and Mariah was transferred to a high risk obstetrician for the remainder of her pregnancy. Though she was considered high risk, the OB only cautioned her against lifting anything greater than 10-15 pounds, due to the amniocentesis, which can cause pre-term labor.
“Other than the lift restriction, things were pretty boring,” Mariah said.
As they proceeded with the standard new baby preparations, Mariah and her husband Juan were also interviewing neurosurgeons and lining up the many doctors who would treat their daughter, who they named Lylah, after she was born.
Lylah’s Birth and First Surgery
While Mariah’s pregnancy was relatively uneventful after Lylah’s diagnosis, her birth heralded a new chapter for the Garces family. The delivery room for her scheduled C-section was filled with nurses, doctors, even medical students. The neurologist who would perform surgery on newborn Lylah was not in the delivery room, but on stand-by at the hospital.
“Lylah was breech, so it took nearly 30 minutes to complete the C-section,” Mariah recalls. “The doctors had to push with a lot of force on my stomach to get her out. At one point, I remember them asking for a stool so they could get more leverage. I actually had to ask them to stop for a minute because I couldn’t breathe with all the force they were putting on my diaphragm. I had bruises all along my stomach.”
When Lylah was born, she was purple from the waist down, and was not breathing on her own. The doctors showed her to Mariah, and then took Lylah away to be examined. The breathing issues were quickly corrected. Then, less than 24 hours after she was born, Lylah underwent major surgery to close her spine.
“The hardest part of all of it, other than the trauma of her delivery, was leaving the hospital while my baby stayed there,” Mariah said.
Mariah and Juan finally took Lylah home from Winnie Palmer Hospital two weeks after she was born, a short stay compared to many other children. But, each time Lylah was hospitalized for six surgeries and countless procedures over the past two-and-a-half years, they were met with the same sentiment: “I’m sorry.”
“Hearing someone apologize for your child stings every time you hear it,” Mariah says. “But Juan and I have so much to be thankful for.”
Today, daily life with a thriving, nearly three-year-old, keeps Mariah and Juan on their toes…
6:30 a.m. Wake up, Mariah and Juan take turns getting ready.
7 a.m. Lylah’s awake! Her nighttime diaper is changed and her catheter is inserted for the day. She picks out her outfit and Mariah helps her put on her pink rhinestone-bedazzled leg braces.
7:30 a.m. Breakfast!
8 a.m. The family heads out the door, sometimes to a doctor appointment, but most often Juan and Mariah proceed to work and school after dropping off Lylah at medical daycare, which is very similar to any other daycare, except the staff is trained to care of children with a wide variety of disabilities. Lylah averages at least one doctor appointment per week, either for a regular check-up, or especially if she is sick or has fallen down and injured herself (even the smallest bumps and bruises need to be checked out).
6 p.m. Everyone is home for the evening. Juan makes dinner while Lylah and Mariah play. Recently, she’s been working on stringing colorful beads for fun and therapy.
6:30 p.m. Dinner as a family.
7-8 p.m. Bath, books and bedtime for Lylah.
Seems like a typical day for a family of three? It is. While Spina Bifida presents challenges at times, Lylah walks confidently with the help of twister cable braces and a walker or crutches when needed. She talks and plays just like other children her age and the Garces home is full of laughter.
And even though they still hear “I’m sorry” from nearly everyone they meet, the Garces continue to celebrate the smallest joys with Lylah: from eating and standing on her own, to new leg braces that transformed her ability to move around their home and daycare. All typical things to celebrate with a new baby and growing toddler, however for a child with Spina Bifida, these moments are important milestones.
“It is a little different than other children, as the process to learn a new skill takes a lot longer,” Mariah explained. “The first time she stood, it was amazing! But it was probably another six to eight months before she was able to do it regularly. So every time, it was a celebration.”
“Even though the hard times may seem to overshadow the good days, we choose to embrace our ’normal’ with grace and laughter,” Mariah says. “Lylah will always be perfect to us. We love her no matter what!”
While no parent would wish a lifetime of challenges on their child, Mariah and Juan choose each day to celebrate the daughter God gave them.
Originally posted February, 2014