One Family, Three Children, Two Craniotomy Surgeries

Posted on Jul 06, 2017

Julietta (right) at Johns Hopkins
All Children's Hospital

Against all odds, Jacqui is a mom.

It took five pregnancies, two miscarriages, multiple surgeries, death-defying diagnoses and even a recommended termination.

But Jacqui really, really wanted to be a mom. Her determination, her big heart and fate finally made it so.  
These days, three smiling, shiny faces know her name: Mom.

It has been a long, twisting path that fortunately led her to Johns Hopkins All Children’s Hospital and neurosurgeon Gerald Tuite, M.D., director of research for pediatric neurosurgery.

“Two of Jacqui’s three children were diagnosed with craniosynostosis, a premature closure of the cranial growth plates,” Tuite explains. “In their case, the sagittal suture [a connective tissue between bones of the skull] was closed, leading to a misshapen head–a long, narrow head with a prominent forehead and posterior skull. I recommended surgery in both cases to help correct the head shape, to give the brain more room to grow.”

A Long Road to Three Healthy Babies

Having lost her first pregnancy to miscarriage, Jacqui was told with her second that the fetus had trisomy—which involves an abnormal number of chromosomes and often leads to miscarriage, deformities or death in infancy. A Tampa obstetrician recommended that she terminate. Jacqui wasn’t ready to give up that easily. “I was going to have this baby and love her to infinity no matter what,” Jacqui declares.

Her risk paid off.

Julietta, now 5, was born healthy in north Safety Harbor with no sign of trisomy—to everyone’s surprise.

Despite a cesarean section performed after Julietta was stuck in the birth canal, doctors didn’t initially notice that her head was misshapen. Finally an observant pediatrician at Julietta’s three-month checkup noticed something amiss. They scheduled an X-ray that same day.

Jacqui barely had time to register that something wasn’t right with her seemingly heathy child, when she received a call telling her a head specialist was needed. Right away. Her doctor suggested Johns Hopkins All Children’s. Tuite diagnosed Julietta with sagittal craniosynostosis—a premature fusion of the skull.

“I was in shock,” Jacqui recalls. “Dr. Tuite was so patient with me. I must have asked the same questions five times. Dr. Tuite explained that a fused skull wouldn’t allow her brain to grow. We knew surgery had to happen.”

Tuite prepared Julietta for neurosurgery just days later.

“There are two main operations for this diagnosis,” Tuite explains. “Julietta had the open craniotomy and calvarial remodeling, which is the skullcap. She did beautifully, but the really interesting part of the story is that, just a few years later, Jacqui had a son also born with sagittal craniosynostosis.”

Not only is it the first instance that Tuite has seen where two siblings are born with sagittal craniosynostosis, but baby Ace, now 1 year old, had a minimally invasive surgery instead of the more traditional operations that Julietta underwent.. In fact, it is the only instance he is aware of in which two siblings received different surgeries for this same sagittal craniosynostosis diagnosis.

While there are many benefits to a minimally invasive surgery—from less anesthesia to smaller incisions—Jacqui appreciated that Julietta, who had the full surgery, did not require a helmet. The helmet—cranial orthosis—helps reshape the head after minimally invasive surgery. Tuite is happy to be able to offer both surgeries and was very curious to hear Jacqui’s thoughts on each to get this parent’s unique perspective.

The Only Minimally Invasive Option on the West Coast

Johns Hopkins All Children’s is the only place on the west coast of Florida that offers the minimally invasive option to its younger patients with craniosynostosis. 
Ace faced other medical issues including heart, vision, hearing and stomach that have made him somewhat of a regular customer at the hospital, and he continues to respond well. “All of my kids are throwing it out of the park,” Jacqui says with pride.

In between Julietta and Ace, Axyl was born in 2014. While he has some hearing issues as well, and requires speech therapy at the Johns Hopkins All Children’s Child Development and Rehabilitation Center, he is a healthy boy.

These days, things are running smoothly. Julietta and Ace have completed surgery. Julietta is a healthy, happy kindergartener and Axyl and Ace receive regular therapy. Jacqui makes use of several of the Outpatient Care Centers, which are closer to her home in north Pinellas. She wouldn’t consider taking her children anywhere else for treatment or surgery.

“I want my story to give parents hope. Things can be hard, but trust yourself and your instincts as a parent,” Jacqui advises. Having spent weeks in the hospital with her children over the years, Jacqui considers the staff and medical team family. “I love Johns Hopkins All Children’s. We go to visit the staff in the NICU and they still remember us. I don’t know what I would do without my All Children’s family.”

Jacqui overcame the odds, became a mom and has the healthy, happy family she always wanted with a little help from Johns Hopkins All Children’s.

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