Navigating an unexpected journey: Cleft and craniofacial awareness

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It’s a challenging image to consider: A young family discovering that their new addition will be born with a health problem. They stay positive, in the back of their minds knowing there will be much more to come once their little one arrives. Unlike the original plans, it won’t be the usual challenges of parenthood. There will be more. There will be surgeries, extra hospital time, potentially time off from work.
It’s a challenging image, indeed, but it is one that families right here in the Capital Region are facing after finding out there little one will be born with a cleft lip or palate.

An unexpected journey
In 2013, Lisa and Lucien Delaloye were expecting their second child to arrive. Their first, Maddie, was ready to be a big sister. And while many cleft lip cases can be identified as early as five to six weeks and cleft palate as early as seven to eight, when Amalia was born, the Delaloyes had no idea. She was born with a cleft palate and Pierre Robin sequence, a condition where Amalia’s tongue would fluff back over her airway.
The first month of this little life was spent in the NICU.
After gathering opinions from doctors both within and outside the Capital Region, the Delaloyes met Dr. Oluwaseun Adetayo, who had moved to Albany that same year Amalia was born to establish a program at Albany Medical Center for children with their child’s very conditions.
“A lot of cleft patients need 5 to 10 specialists and the goal was to bring specialists together to coordinate the care and decrease the burden on the families,” Adetayo says. Yet out of her program came the Cleft and Craniofacial Center, which officially opened its doors in June 2015.
From speech therapists and psychologists to orthodontic expertise, ENT, and everything in between, the center acts as a catch-all for services for children with cleft lip or palate.
At 15 months old Amalia had her palate repaired with Dr. Adetayo, another surgery not long after to relieve her tongue tie. “We were really just starting the cleft palate services,” Lisa says, but with the help of the center, they were all right here in the region. “They are constantly checking in, making sure she is well. They have all been very accessible.”
Now Amalia does an annual clinical visit with her team of doctors at the center. She has just finished being evaluated by a speech therapist there who is working with Amalia’s preschool to ensure they are bridging what she is learning in both places.
Today, at four-and-a-half years old, Amalia is “catching up,” Lisa says, adding that her youngest’s focus now is on speech and, of course, following around her big sister.

Trusting your gut
While Amalia’s journey started more than four years ago, another young one’s journey is still at its start. It’s 9pm on a Thursday night in June, and Colonie residents Mario Schiavone and Tanya McSherry are on their way to Boston for pre-op for a late June surgery. Their son Vincenzo, just 22 months old, is resting in the back seat.
“We knew after our 20-week ultrasound that he had a bilateral cleft lip,” Tanya says. “We later had a fetal MRI done where they diagnosed his cleft palate.”
Vincenzo was born at Albany Med, staying only a week in the NICU for feeding issues. The hospital was a familiar space for the couple (in fact, their relationship began over a grilled cheese in the hospital’s cafeteria—Tanya a nurse and Mario then a security sergeant). But fast forward to today and they have been navigating a journey they didn’t anticipate, taking it head on with the most positive of attitudes. “When you’re standing behind your loved one, you just be the best parent you can be and do everything you need to do for them,” Mario says. Vincenzo had his first surgery at just five-and-a-half months, a lip adhesion procedure. At 13 months, he had his palate done. Both were handled at Albany Med with Dr. Adetayo. “Two surgeries with her and I said, ‘I really want to thank you because you are basically doing a miracle on our son,’” Mario recalls, adding that like any Italian he felt compelled to hug her. She happily obliged. “You feel like you have a friend in the operating room.”
Since then, Vincenzo has been learning away, working on sign language, making up games, just being a toddler. And yet his life is quite a bit more packed than the average tot. “We see his pediatrician more than average, but just for weight checks to make sure he’s growing,” Tanya says. Like Amalia, Vincenzo sees specialists to ensure he leads the best life possible.
While Boston wasn’t originally part of their plan, it is a path they felt they needed to take for the next step in their son’s journey.

Finding the support and building awareness
That’s just it about this journey for families of children with cleft palate or lip. It is all about trust. Trust in themselves to make the best decisions possible for their children. Trust in their doctors to always provide the best care. Trust even in their employers to allow them that time to take care of their little ones.
“One of the things that surprised me is that everyone we know seems to know someone who has had [cleft palate or lip],” Tanya says. “It’s a lot more common than the average person would realize.”
July is cleft and craniofacial awareness month. Dr. Adetayo says that when the center opened there were less than 40 patients in the system. Last year, nearly 3,000 outpatient visits were made, not including specialty areas like genetics, psychology and neurosurgery. “The need is there.”
And with funding from community members committed to the cause, like Lisa and Robert Moser of Saratoga Springs who last year donated $2.5 million to the center, the resources for these children will be here in the region to stay.
“Some issues like this, many people don’t think exist here,” Dr. Adetayo says. “But the one thing we are trying to do is create cleft and craniofacial awareness.

— By Rebecca Whalen

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