When Aiden Turner was born, his mother looked at his newborn face and sighed with relief.
Understanding hidden cleft palate
Submucous cleft palate, or hidden cleft palate, is a birth defect that can cause numerous challenges for infants and toddlers.
The muscles of the soft palate have two important functions, says Amy Morgan, speech language pathologist for Shriners Hospital for Children. They seal our nose from our mouth while were eating, helping a baby create suction from the breast or from a bottle. When those muscles arent in the right place, babies will struggle to feed effectively. And those muscles also seal our nose from our mouth while were speaking.
When we make consonant sounds that require pressure build upfor example, a “p” or a “b” or an “s”were actually using our soft palate to seal off our nose so that air doesnt leak out. If a problem exists with those muscles from birth, its very difficult for a child to learn to make consonant sounds.
When submucous cleft palate is diagnosed, often when a child is 4, 5 or 6, a lot of times, there are feelings of both relief and validation for parents, knowing that theres an answer to whats happening with their child and that there is treatment available, Morgan says.
Some results of treatment are evident immediately after surgery, such as reduced air leakage through the nose. Otherssuch as correcting bad habits in speech that a child may have developed to compensate for language difficultiescan take years to correct fully.
What signs should parents look for in determining whether their child might have hidden cleft palate? Morgan suggests the following:
- Difficulties with suction while breastfeeding or bottle feeding (Note: A modified bottle can help.)
- Milk coming out of the babys nose while feeding
- A bifid uvula, in which the tissue that hangs at the back of the roof of the mouth is split in two
- Struggles with speech development (Babies tend to start babbling between four and six months, Morgan says. Often, the first sound babies start with is m, followed by b, d and g. When babies dont make these sounds, that can be a sign that theres not enough pressure being created.)
- A hyper-nasal sound that occurs when a child tries to pronounce the letter d or t
For more information, visit the American Cleft Palate Association, www.acpa-cpf.org.
Aiden’s father and his older sister, Taylor, were born with a cleft palate, a deformity that occurs when the roof of the mouth doesn’t close completely as an infant is developing in the womb. Newborns with cleft palate also might have a split uvula, a fleshy extension of the soft palate that hangs above the throat. When the upper lip of an infant doesn’t close in utero and appears to be split, this is known as a cleft lip.
A genetics counselor told Aiden’s mom, Tiffany Banks of Chicago, that Aiden had a 50 percent chance of developing a cleft palate. Tiffany prepared herself for the worst, knowing there was a strong chance her son would need to undergo surgery to correct the deformity, just as his sister and father had.
But when Aiden was born, “we looked into his mouth, and he had a full palate and a long uvula, and everything looked like it was there,” Tiffany says. “We were so relieved. We thought everything was just fine.”
Right away, though, there were causes for concern.
Aiden had trouble eating from the start; simply sucking on a bottle took great effort. At five months old, he wasn’t making sounds. “My daughter Taylor, even with a cleft palate, she would coo and goo. Aiden wouldn’t,” Tiffany remembers.
At nine months, if Aiden did make a sound—which was rare—it was unintelligible.
At 12 months, “He would look as if he was trying to say something, but the words wouldn’t come out.
“That’s when I knew: Something’s seriously wrong. And I started researching.”
Aiden had submucous cleft palate, also called hidden cleft palate, in which the mucous membrane of the roof of the mouth covers the cleft, making it difficult to see. One in 1,000 babies are born with both cleft lip and cleft palate, according to the Cleft Palate Foundation, and one in 2,000 babies are born with cleft palate alone. But the percentage of children who are born with hidden cleft palate is more difficult to quantify, says speech language pathologist Amy Morgan of Shriners Hospital for Children, Chicago.
“It’s a tricky question because one of the things that makes understanding submucous cleft palate challenging is that it doesn’t always cause a functional impairment, and we don’t really know why that’s the case,” says Morgan, who works with children who suffer from this condition.
“Often, children with submucous cleft palate aren’t diagnosed until they are 4, 5 or 6 years old.”
Submucous cleft palate can easily be treated with surgery and speech therapy—often years of therapy. But getting to the point of diagnosis and treatment often is a frustrating journey for parents—and Aiden’s journey, even with a family history of cleft palate to present to physicians for consideration, was no exception.
Fighting to be heard
When Aiden was a year old, Tiffany’s research led her to believe he had hidden cleft palate. “It sounded a lot like what Aiden was going through,” she says. But it took nearly three more years for Tiffany to find a pediatric team that took her concerns seriously and to support her in getting the help Aiden needed.
At 18 months, an early intervention specialist suggested submucous cleft palate might be the cause of Aiden’s difficulties in speaking. “He would just try and try to talk to me, and I couldn’t understand him,” Tiffany says. But an ear, nose and throat specialist who examined Aiden six months later with a nasal scope said he “couldn’t make a judgment call,” Tiffany says. He recommended Aiden continue speech therapy.
And so it went, for nearly two more years. As Aiden continued speech therapy through the state’s early intervention program—with limited results—Tiffany secured an appointment with a pediatric development center. At that time, his sounds were limited to those made with the letters m, n, h and w and to vowel sounds. It was almost impossible to understand him because everything he said sounded nearly the same, Tiffany remembers.
Specialists there determined Aiden spoke with just 20 percent intelligibility, “And that was just to me,” Tiffany says. But they ruled out issues related to his mouth. Their advice: Continue speech therapy.
Meanwhile, Aiden became quiet and shy. When he chose to speak, it was usually to his mother. “He would get so frustrated when he would say something and people would ask him, ‘What?’ He would shut down,” Tiffany says.
He learned the basics of sign language and, when he aged out of early intervention and moved into a special education program, he received a tablet that could help him communicate as well. But his communication was limited to home, speech therapy and special education, making his world very small.
And because so much of Tiffany’s time with Aiden was spent teaching him how to communicate, there wasn’t time left for her to teach him other preschool basics. “We spent all of our time—all of our time—working on speech, so we didn’t work on ABCs; we didn’t work on colors; we didn’t work on anything you would ordinarily work on with a child because every day was devoted to trying to get him to make sounds,” Tiffany says. “He was very, very far behind.”
All the while, Tiffany was reaching out to specialists in search of an answer. When an orthodontist who evaluated Aiden for an underbite told Tiffany as he conducted the exam, “This boy has a submucous cleft palate,” Tiffany was livid: “After all of those years of trying to get him diagnosed and knowing something was wrong, it made me so angry to think, ‘That’s what I tried to tell people last year.” He referred Aiden to the cleft palate team of an academic medical center—but a speech pathologist on the team didn’t believe Aiden’s condition warranted surgery. She recommended continued speech therapy instead, with a focus on articulation.
“I told her, ‘He’s over 3 years old, and he can’t speak. There’s no progress being made.’ But she told me, ‘I just don’t think surgery is an option,’” Tiffany says.
Then came the night Tiffany’s mother saw an advertisement on television for Shriners Hospital for Children—specifically, for the hospital’s cleft palate services. “She called me and said, ‘We have to get him into Shriners. We have to see them.’”
They drove 45 minutes to Shriners in Tiffany’s mother’s car for their first appointment.
What happened next changed everything.
The road to a cure
Nearly four years and more than 536 appointments after Aiden’s birth, his family finally had the answers they were looking for and the support that would enable him to speak for the first time.
On the day of their visit with the cleft palate team at Shriners, Aiden was diagnosed with submucous cleft palate and placed on a priority list for surgery to correct the condition.
Three weeks later—the month before Aiden’s fourth birthday—Aiden underwent surgery.
Although this was the support Tiffany and her family had waited for, “It was still absolutely frightening knowing that something’s wrong, and then having someone say something’s wrong, he needs surgery, and he needs surgery right away, and preparing him to go into surgery,” Tiffany says. “It was a big shock. I was worried, too, that because Aiden was so much older, he would remember the surgery.”
Meanwhile, Aiden didn’t comprehend what was about to take place. “He just knew that he liked their playroom,” Tiffany says.
The recovery was rough: soft foods only for the first month, with three months of therapy, three times a week, afterward. But the Shriners team was very good with Aiden, bribing him with toys in the hospital to encourage him to eat a cup of pudding and working together afterward to ensure a coordinated approach to his continued treatment.
Even when Tiffany’s mother’s car broke down and she and Aiden had to ride the bus to Shriners, two hours each way, she felt grateful—to her mother and to the team at Shriners. “I really thought he was never going to speak,” she says. “It was a horror story.”
Today, Aiden is 10 and in the fourth grade. He loves soccer, football, baseball and running, with plans to try out for the track and field team next year. His reading skills are behind those of his peers, but his math skills are on par with the average fourth-grader. With the help of a paraprofessional, Aiden attends class in a mainstream setting.
For years, Aiden had trouble making friends due to difficulties speaking with kids his age and the shyness he struggled to overcome. “Things seem to be getting better as time goes on,” Tiffany says. “His speech is fantastic. Only sometimes will he have a lisp or difficulty saying a word, and he knows what those challenge words are. He’ll stop and think for a moment before he tries to say them.”
While the memory of those early years remains—“If he says something and you ask him, ‘What?’ he almost immediately shuts down,” Tiffany says. “He doesn’t like to talk to adults for the same reason”—Tiffany and Aiden both know his life would be very different if she hadn’t followed her maternal instincts and fought for the help he needed.
“Without that surgery, I don’t think that he would be speaking today,” she says, “and he would be stuck in the same place he was when he was 3.
“Trust your instincts,” she advises parents facing a similar situation. “I knew when Aiden was a year old that something was wrong, and it took two more years to get a diagnosis. And don’t stop fighting for your child.”