Caring for a cleft lip
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By Mark Andersen
In the middle of the night, after everyone had gone to bed, she stood before the glass of the hospital nursery, looking at how different her daughter looked from all of the other babies.
Erin Radenslaben had learned about the child's cleft lip and probable cleft palate during a routine ultrasound. Knowing it would be her last baby, she had taken her son, Ethan, 10, who wanted to learn.
And then while the technician was watching the screen, she blurted out, "Oh, I think there's a cleft lip," Radenslaben said.
"They're not supposed to say that, but I think she was surprised."
During the birth, Radenslaben put on a good act, saying all the right things. But now, alone before the glass, her thoughts wandered toward a hard and lonely future.
What would happen when her daughter started school?
What would happen years later when she wanted to start dating boys?
Lisa Nelson, another Lincoln woman, learned about her daughter's cleft lip and palate in that hopeful moment between the misery of childbirth and the joy of seeing her newborn for the first time.
Before bringing the baby up to her, her Cherokee, Iowa, physician, Dr. P.J. Harrison asked, "Do you know what a cleft lip is?"
Nelson recalls that she giggled. "Yeah?"
"Well," she said, handing over the child. "Your daughter was born with a cleft lip."
There was a hole on the right side of her face.
"You could practically see up to her brain," Nelson said.
"My husband was shocked. He thought that she was hurt."
Then the doctor asked what name they had chosen for her.
"She was looking for some reaction," Nelson said.
"This baby's name is Indigo Rose," she said.
"That's a beautiful name."
"This is a beautiful baby."
Thus began two long and complex journeys that, while incredibly successful, are far from complete.
The mothers say many difficulties that lay before them weren't foreseeable.
Feeding a child unable to develop mouth suction can be a nightmare. They often can't drink from a breast or normal baby bottle. Using special bottles, feeding can be so slow it seems constant.
Even after surgery, the baby must be taught to suck. Most infants do that by instinct.
That's just the beginning. In serious clefts like these, there probably will be one or more surgeries to fix the lip and others to close the palate.
Over the next 18 years, there may be additional surgeries to extend the palate, break and extend the upper jaw, adjust the nose, straighten or remove twisted teeth and correct scars.
There can be hearing problems brought on by frequent ear infections, caused by poor drainage of the Eustachian tubes. Speech impediments created by poor hearing can be exacerbated by the nasal tones given to some children with cleft palates, and the difficulty they face in producing the sounds for P, B and M.
Parents can have feelings of guilt and blame. The children may deal with being teased, with feeling different and inferior.
There will be scars from all of this. And it will cost lots of money.
"You become pretty good friends with your orthodontist," Radenslaben said. "I'll put his kids through school."
This long journey goes much more easily with an experienced guide, advice from experts, weapons to defeat bureaucrats and a sympathetic ear, said Debbie Oliver, a Las Vegas housewife who founded the outreach program of Cleft Advocate after her own daughter was born with a cleft lip and palate 17 years ago.
Her daughter "now leads a normal teen life - Oh yes!" said her mother.
But the critical first steps of a parent's journey, often made haltingly and with little knowledge, can set the full course of travel.
There are probably several good directions a parent can take, and several bad.
Radenslaben and Nelson both praise the results of treatments for their daughters. Radenslaben chose Lincoln reconstructive surgeon Philip Metz.
Nelson went to Shriners Hospital for Children in Chicago.
Radenslaben began her journey on the Internet. She Googled on clefts and came up with dozens of hits. Speaking with others in the community, she heard good things about Dr. Metz.
Medical bills so far have climbed above $21,000 for the 14-month-old, and not all of the bills have arrived.
After insurance and deductibles, a state program picks up the remaining costs, although it doesn't pay for special baby bottles, which can run $25 apiece.
Emma is beginning to say "momma" and "gogga," and will soon begin speech therapy through a state program for early childhood development.
Nelson began her journey when her physician set up an application with Shriners and put her in touch with Julie Luken, a mother who had began the same path five years earlier.
Indigo, now 5, was at the Chicago Shriners hospital nine days after birth.
"Shriners took care of everything," she said. "They've been a blessing."
She had worried that because Shriners provides free care it was probably also lesser care.
It wasn't true.
"They have the best surgeons. They're awesome."
These informal networks have been the keys to the children's future.
Oliver said she worried when new federal privacy rules made it tough to connect patients' parents.
Some parents of children with clefts still leave the hospital without knowing how to feed their children, she said.
"How are we going to do outreach now?" she wondered.
With the maturing of the Internet about three years ago, it hasn't been a problem.
Parents have put their own stories on the Web, inviting new parents to call them.
The important messages they pass on, said Oliver:
They're not alone.
Don't just seek out the first plastic surgeon available.
Look for a team of experts.
The different centers have different approaches, she said, but that's not critical.
"I could talk surgical technique till the cows come home," she said.
But the differences between specialized programs are small in comparison with the differences between experienced experts and those who don't specialize in clefts.
"The key is to eliminate isolation," she said. "With the Internet, we are able to reach so many more people, more quickly after diagnosis."
Nelson said Shriners helped her daughter realize she was special.
"She's not shy," she said.
When people ask her about the slight scar on her face, she tells them she was born with a hole in her face, but the doctors fixed it.
Nelson knows that someday her daughter will be a teenager.
"We've done the best we can in preparing her," she said, "but sometimes it isn't going to be enough."
But she'll always love herself, she said, and know that she's blessed.
Reach Mark Andersen at 473-7238 or mandersen@;journalstar.com.
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