On a different note, a school nativity play in Nevada recently went viral after an unexpected wrestling match broke out.
The family has welcomed News 4’s Ali Meyer to help tell their story, hoping to raise awareness about a small medical device that has profoundly impacted their lives.
Will and Hannah Blankenship learned about their son’s condition during a routine prenatal ultrasound.
Baby John was born with a severe bilateral cleft lip and palate.
“We fell in love with the smile,” said Will. “It was a very big smile.”
Cleft lip and palate are common congenital deformity that comes with big challenges for newborns.
Cleft babies will need multiple surgeries in the first years of life.
They often have trouble feeding and gaining weight.
In Oklahoma, there is a new tool for helping babies like John Blankenship.
Prosthodontist Dr. Roberta Wright specializes in a baby mouthpiece called the Nasal Alveolar Molding (NAM). She is the only doctor in Oklahoma using this life-changing prosthetic to help babies born with cleft lip and cleft palate.
“It really produces really great outcomes,” said Dr. Wright. “It’s a very unusual-looking, kind of like a baby denture without teeth on it.”
Dr. Wright makes the NAM in her Oklahoma City laboratory.
“We make adjustments weekly to physically push those bones closer and closer together to decrease the size of the cleft,” she said.
Dr. Wright designed a NAM for Baby John when he was just two weeks old, and for three months, the NAM gently narrowed his cleft, shrinking the defect one millimeter at a time.
Every week, sometimes twice a week, Dr. Wright made adjustments to the NAM, slowly preparing Baby John for surgery with pediatric ENT Dr. Robert Glade.
“I was shocked,” said Pediatric ENT Dr. Robert Glade. “We would measure (the cleft defect), and it decreased in size by three times. I mean, it was dramatic how much closer the skin came together where the clefts were. And now when I fix the palate, it’s going to be a much easier palate surgery because the sides of the cleft palate are so much closer as well.”
Babies who use a NAM are able to skip at least one surgery, sometimes two.
“It was it was amazing to see that,” Will said. “We know for sure it helped.”
Dr. Glade believes the NAM prevented at least one surgery during John’s first year of life.
“I would have needed to use two phases to close his cleft because it was so wide at the beginning,” said Dr. Glade. “And with the NAM device, it narrowed tremendously. Also, the nasal outcomes are far better. (Using the NAM) can prevent the need for a rhinoplasty or a fixing of the nose defect down the road. I would give the NAM device to every baby I could if it was possible.”
Additionally, the NAM allows cleft babies to eat better, gain weight, and manage reflux.
There are so many benefits, it is shocking to learn insurance rarely covers this medical device.
It is not covered by Medicaid.
“To me, eating is a necessary part of everyday life. So even just for that aspect of it, this feels like necessary care for a baby with a cleft,” said Hanneh. “So even if you just want to look at it from that angle and not think about the fact that it might potentially save us a nose job, the fact that it certainly saved us a second surgery.”
It is frustrating for cleft families and medical professionals that this life-changing prosthetic is rarely covered by medical insurance.
“What is medical insurance supposed to be doing for us? You’re enabling that child to feed better, to breathe better, to have better surgical outcomes, to have a better quality of life as they get older. For me, it really should be a no-brainer,” said Dr. Wright.
A custom NAM device costs between $7000 and $10,000.
Baby John had a generous family member who helped cover the expense.
Many parents turn to crowdfunding for help.
“There have been studies that have looked at this and show that it costs less in the long run if we’re able to use NAM,” said Dr. Glade.
For children with a cleft, that final surgery, a nose job, isn’t done until they’re fully grown in their late teens.
“Kids are going to tease them,” said Dr. Glade. “They’re going to know they’re different, and we can take that away, or we can diminish that if we can have the nose looking good right from the start. That’s a huge deal for kids as they’re going through school. If we can make the nose look good from the beginning, it’s such a big deal for these kids.”
Baby John’s lip surgery was a smashing success.
He is healing and growing, and while his smile has shifted, his family is still celebrating good health, precious progress because of the NAM.
“I will shout it from the rooftops that if you have a baby that was born with a cleft, especially a bilateral, that it’s worth the money,” said Hannah. “It’s worth the hassle.”
For this family, Christmas came early this year.
John Blankenship will have another surgery next summer to close the hole in the roof of his mouth.
His family is so grateful for their medical team and this tiny medical device, the NAM, which helped John in his journey.
