BRANDON — After a textbook pregnancy, 21-year-old Ricki Akers was thrilled to meet her unborn son, Layton.
She was anxious, but expected everything to go smoothly. However, the first month after little Layton's birth was anything but ordinary.
"My pregnancy was the perfect pregnancy. They never found anything they thought was concerning," said first-time-mom Akers. "They always said everything looked fine so we didn't have a diagnosis until after he was born."
The diagnosis was Pierre-Robin Sequence, or PRS. The condition causes the lower jaw to stop growing in utero. As a result, the tongue is pushed up and back into the oral cavity to where it precludes normal palate development.
"It leads to the child having a cleft palate which usually is not that big of a deal," said pediatric otolaryngologist, Dr. Joshua Mitchell. "The bigger concern is once these kids get out of the womb that the small jaw pushes the tongue back and actually causes airway obstruction and that impacts their ability to feed and coordinate a suck-swallow-breathe."
Akers and her fiance Joey Pedrosa were terrified. Their newborn son had been immediately whisked away to the Neonatal Intensive Care Unit of Brandon Regional Hospital, where he would remain for the next month.
"It was devastating for me because I waited nine months to see my baby and then I didn't get to see him when he was born," Akers said. "We couldn't hold him when he was a newborn, we couldn't feed him because he had to be tube-fed. It was really hard for me to watch my son struggle to breathe."
Within a matter of days, Mitchell was caring for baby Layton and explaining the severity of the case and future options to Akers and Pedrosa.
Together they decided to perform a rare and fairly new surgery to expand Layton's jaw, which in turn, would pull his tongue forward and allow him to eat and breathe normally.
"Historically these kids underwent a tracheostomy and a g-tube. That works but the problem is that if you don't have to do that it's nice because they come with their own set of problems and circumstances," Mitchell said. "So the thought is what can we do to make the jaw grow. This procedure is called the mandibular distraction and it's been in evolution for a couple of decades."
Mitchell cut into the jaw bone, creating a small gap. Then, with external plates he would slowly, over the course of nine days, advance the jaw bone, widening the gap, which would allow new bone to form, and in turn bring the tongue forward.
Mitchell says this internal device ends up being less invasive than the external options, but the procedure is challenging.
"There are not many people who do the procedure on these neo-nates and I did it in my fellowship and training, but most surgeons who do it maybe do one or two a year. So they're not very common procedures."
Fortunately, baby Layton's four-hour surgery was successful and after one month in the NICU and eleven weeks of healing he is eating and breathing normally.
"He's an all-star," Mitchell said. "He's doing absolutely great and he's like any other kid his age from a breathing and feeding standpoint so we're really happy about how well he did. Basically what we still have to do is repair his cleft palate around a year of age."
And Akers is thankful to finally be able to hold her baby boy.
"He's extremely lucky," Akers said. "And I'm so happy we get to have him home and see him live a normal life."
Contact Kelsey Sunderland at [email protected]