A Good Catch Leads to a Home Run for Oscar
Meredith Green-Brown says she had a healthy pregnancy, the natural labor she’d planned for, and that her sweet baby Oscar was perfect.
Her husband though, noticed something less than perfect.
“I thought his head came to kind of a point,” said Patrick. He’s a straight-talking Midwesterner who fled the icy Chicago winters in favor of shorts and flip-flops year round in the sunshine state.
Oscar (now affectionately known as Ozzie) was born on November 10, 2017. He was on the smaller side, so their pediatrician was monitoring his weight frequently. Patrick noticed the doctor would take a little extra time examining Ozzie’s forehead — so he pressed him for an answer.
“Doc, what’s going on?”
After that, Patrick admits; it was a long drive home.
A Good Catch
Meredith and Patrick’s attentive pediatrician confessed; he’d felt a ridge in Ozzie’s skull, and he thought he might have a rare condition known as Craniosynostosis (kray-nee-o-sin-os-TOE-sis). Ozzie was just three weeks old. Newborns are born with plates held together by fibrous material called “sutures” that give room for the brain to grow. When two or more plates fuse together prematurely, the head appears misshapen as the brain continues to grow, the pediatrician explained. Patrick was first to say, “Oh, my friend’s baby had a misshapen head. No big deal, it’ll heal, right?”
The doctor explained that while many babies today wear tiny helmets, Plagiocephaly is different. That kind of unevenness in a baby’s head is due to pressure on the back of the head when the baby lies flat on his or her back. This was different.
And for the Browns, much scarier.
“Once he said that and started talking about neurosurgery and plastic surgery, all we heard was Charlie Brown’s teacher saying, ‘Whaa Whah, Whaa, Whaa,'” said Patrick. “It was overwhelming,” said Meredith, formerly the Executive Pastry Chef at Scottsdale National Golf Club before Ozzie came along. If left untreated, Craniosynostosis can lead to serious complications such as severe pain, cranial deformities, cognitive impairments and unyielding pressure on the brain.
But the Browns say they were fortunate; their pediatrician was knowledgeable and attentive. He knew exactly what to look for. And, he sent them directly to Phoenix Children’s Hospital.
They didn’t know it at the time, but the expertise they needed was just 40 minutes away. When so many parents have to get on a plane, the best care was right in their backyard.
Decisions and the Dream Team
It seemed like an endless wait, but a month later Ozzie was seen by Ruth Bristol, MD, a pediatric neurosurgeon and Davinder Singh, MD, a craniofacial plastic surgeon. Ozzie’s pediatrician was right; their little boy was indeed diagnosed with Metopic Craniosynostosis. This rare birth defect occurs in one in every 2,500 babies. “I cried a lot. You never ever expect anything to go wrong,” says Meredith. She had poured herself into research over the holidays, and after meeting with the renowned team, they were immediately comforted.
Drs. Bristol and Singh, it turns out, have built a stellar reputation as a formidable team. The two work together to treat children with neurological defects and disorders related to the skull and or/face, and often perform surgery at the same time – each bringing their area of specialty to the (operating) table.
There are two options for surgically repairing Craniosynostosis. Cranial Vault Remodel, or CVR is often the standard of care at many hospitals. The surgeon must precisely reshape the area of the skull in one surgery; however, it is a more invasive option, and requires a longer recovery. But at Phoenix Children’s, Drs. Bristol and Singh recommended a significantly less invasive endoscopic option.
They believe that excellent results can be obtained by removing the abnormal suture at an early age, and then allowing the infant’s head to grow in a helmet that controls the shape. This procedure must be done before 5 months of age – and preferably at 3 months of age – because the bone will still be soft enough to reshape, and there will be sufficient time for growth.
“Since ‘single suture’ craniosynostosis is the most common form, we spend a lot of time educating pediatricians around the valley – and the world – to make referrals early so that we can offer the minimally invasive option,” says Dr. Bristol.
“We were educated about the options,” said Patrick. “Our team was certain that the endoscopic surgery was the best option for Ozzie long term; since it had been caught early. We debated whether we needed a second opinion, but we quickly learned that Phoenix Children’s is where people go to get second opinions.”
While Meredith and Patrick say they were impressed with their team at Barrow Neurological Institute at Phoenix Children’s, they say waiting for their little guy to turn 4-months-old, the ideal timeframe for surgery, was agonizing. When the day finally arrived on March 1, 2018, watching Ozzie being rolled into surgery took their breath away.
How did they cope? Turns out, with a little nourishment.
It’s the People that Make Phoenix Children’s Special
It was a moment at the cafeteria that broke him.
Every parent of a sick child can relate to a moment when they come undone. Patrick’s happened in the cafeteria one night after Ozzie’s surgery. “They were out of fried green beans. It was such a little thing, but I lost it – I just started bawling. The cook was so nice; he even went and made a batch of them for me.” For Patrick, those midnight visits to the cafeteria he says, nourished more than his hunger.
Meredith says there were so many staff members who helped her get through what she described as, “Doomsday.” The nurses who blew bubbles on Ozzie’s way into surgery; the techs in radiology who knew just how to calm Ozzie before a CT scan; and the nurses who knew exactly how to talk to them after surgery when they saw their tiny boy flanked with tubes, sporting a new scar.
“Plus those volunteers walking through the hallways with coffee and treats,” said Patrick. “That hot chocolate really made your night,” said Patrick, smiling a nod toward Meredith.
“Everyone we encountered at Phoenix Children’s treated us with compassion and made us feel so reassured and well taken care of,” said Meredith.
A New Normal
With the surgery behind them, the next part of Ozzie’s journey began. Ozzie would also need to undergo cranial molding therapy. In partnership with Cranio Tech, Ozzie’s continued healing and development required him to wear a custom, cushioned (and decked out) helmet for 23 hours a day, every day, for nine months, starting just weeks after surgery.
The helmet works to apply gentle pressure to the skull to ensure the growth of the head and brain continue to form properly. The treatment requires weekly monitoring, and is not painful for the baby. Ozzie finished his treatment in the fall of 2018. “But we’re not out of the woods until he’s 17,” Meredith reports. Until he’s 3, Ozzie will have visits to this team every six month, and then yearly until then.
“I figure we’ll make a day of it each year,” said Patrick. “We’ll do something special like go to the zoo and celebrate another year of success!”
Meredith, too, crafted her own plan to celebrate the “incredible” care she says they enjoyed at Phoenix Children’s.
Incredicapes for Incredible Kids
While the Browns say they had their own struggles dealing with Ozzie’s diagnosis, surgery and treatment; they reveal Ozzie himself was great. His fortitude and resilience inspired Meredith to take up sewing for the first time, and she created “Incredicapes” – for Ozzie, and for other kids in the Hospital. But it made her feel better she said.
Now, she’s launching Incredicapes.com, and 10 % of the proceeds will support making new capes for kids at the Hospital. It’s her way of paying it forward – to remind families how strong their children of the Superhuman strength these little fighters have.
Right along with Ozzie, Meredith says she changed and grew, too. “I learned from this experience not to sweat the small stuff. What’s most important to us now is health and happiness,” she says. And Ozzie “flies” by and shows off his cape, his tiny scar the only reminder of the battle he waged even before his 1st Birthday.
Life with Spina Bifida only slows him down a little