Sill families raise awareness about cleft palates
August 30, 2012
FORT SILL, Okla.-- Having a child was part of a plan. Having a child with a cleft palate wasn't. Two Fort Sill families discovered how quickly the unexpected turned into the overwhelming.
A child with a cleft lip or palate may seem like a minor problem, one that can be fixed with a simple surgery, but that's not the case.
Cleft lip or palate is one of the most common birth defects, affecting one in 500 children in the United States, according to cleftsmile.org. Unless treated cleft palate can interfere with feeding, speech development and hearing.
"I'd heard of cleft palates, but even when the nurse said your baby has a cleft palate I wasn't even really sure what I was going to see," said Rachel Sours.
The Sours and the Barbatoe families experienced this shock and the added shock of giving birth to children with Pierre Robin Sequence.
Pronounced Roban, the sequence or complex is a birth condition that involves the lower jaw being either small in size or set back from the upper jaw. As a result, the tongue tends to be displaced back toward the throat, where it can fall back and obstruct the airway. Most infants will also have a cleft palate, but none will have a cleft lip.
"At that point it was even a harder hit learning not only does she have one thing but something even worse to work through," said Sours.
A child with a cleft palate is assigned a team of doctors from a plastic surgeon to an ear, nose and throat doctor, to an orthodontic surgeon. The team supports the child throughout their life ensuring their cleft palate does not become a disability.
Aunna Barbatoe said she and her husband enrolled their daughter into the Exceptional Family Member Program right away so they can make sure they're stationed near a cleft palate team throughout their time in the Army.
"God bless TRICARE. Her birth alone was in the tens of thousands of dollars. Her surgeries were multiple thousand dollar surgeries and I see moms and dads on the support pages struggling with insurance won't pay for this or, insurance won't pay for that. All I have to do is get a referral that says she needs it and then TRICARE pays for it. So, God bless the Army, and God bless TRICARE because without them we would be lost," said Barbatoe.
"For military families I think the biggest peace of mind being under the TRICARE umbrella is that we don't have to second guess any of the care that we feel like our daughter needs. If her doctors are on board and we're on board, we don't have to sit there and think about financial repercussions of her getting what she needs," said Sours.
Abigail Barbatoe was born with a "U-shaped" cleft palate which meant she essentially had no palate in the roof of her mouth.
"She had nothing up there. If she ate, food would come out her ears, milk would eventually drain out of her ears. It would come out of her nose," said Barbatoe.
Because of these issues, she didn't let others take care of her child, even family members. That would have left her with little to no breaks if she hadn't had Debbie Bennett, a good friend who essentially became her respite care provider.
"She's been to doctors appointments with me. She learned how to feed Abi. She learned how to let her sleep. She learned right along with me and my husband," said Barbatoe.
Abigail, at two months old, also had severe sleep apnea that required surgery.
The Sours have similar issues because of Pierre Robin Sequence and cleft palate, which means special care of their daughter, Gabby.
"For example, when a normal person has a cold, they have a runny nose they blow their nose. Well with her we don't see it, it doesn't come out her nose, it goes right over her airways. So, all of a sudden we'll hear her be so congested but you don't see anything," said Sours.
Abigail has already had numerous surgeries at the age of 16 months. Gabriel has yet to have surgery but Rachel knows there are still obstacles ahead.
"Speech therapy is going to be a big part of her life for the first chunk of her life," said Sours. Just to learn how to speak clearly and speak in a mouth that a quarter of it is scar tissue once the surgery happens."
Mothers are often given wanted or unwanted advice from others on how to raise their children. For the Barbatoe and Sours families, the outsiders may not even understand the difficulties cleft palates create and so their guidance can be offensive.
"People, they may mean well, but when they ask you when are you going to fix your child? don't ever ask somebody when they're going to fix their baby. There's nothing wrong. My baby is perfect in my eyes," said Barbatoe.
"That was probably the hardest thing I think was people criticizing. "I think they want to help, but they don't have any idea what it's like. We have to be careful about advice that we give. We try to help new moms, but we don't know we can hurt with our words with advice," said Bennet.
Barbatoe joined cleftsmile.org's support group and said the wealth of information was comforting.
"You can Google cleft lip and cleft palate and all you see is horror stories. So we got to talk with other moms and dads and get some information and you know people in Oklahoma were 'like this is who we see.'"
"It's been challenging. Right now I'm teaching my daughter to eat solids and it is so extremely hard. I've ended in tears a few times and then you can go on these support groups and realize every single one of them have dealt with the exact same thing, but guess what? At two years of age their kids are all fine," said Sours.
She said being reminded this will only be a temporary struggle helps her get through.
"You know support groups are not just about children. Sometimes it's adults that have went through it so you're hearing the whole history of what you might expect," said Sours.
The inaugural Oklahoma cleft, Craniofacial Family Picnic is Sept. 15 at 10 a.m. in Reaves Park, 2501 Jenkins Ave. in Norman, Okla. The picnic is meant to raise awareness about cleft palates and other craniofacial conditions and engage families for support as they deal with the ongoing care these conditions require. For more information email firstname.lastname@example.org