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The journey of a family dealing with cleft palate

Seattle Children's Hospital helps patients with a cleft palate before birth by coaching parents.
Carley and Wes Espiritu had counseling for cleft lip and palate before their son was born but the reality after birth still had its challenges.

The moments before a child is born are a mix of sweet anticipation and nerves.

Most pregnancies end with the beginning of a beautiful life and a new member of the family. But, when a doctor has the look of concern moments after delivery, worry and despair can take over a mother’s emotions.

"When he was born I saw the look on my husband's face and my mom's face and I could tell it was more than just the lip," says Carley Espiritu.

She is talking about her boy, Luke, who was born with a cleft lip and palate.

During her pregnancy, Carley and her husband, Wes, had been told that Luke would be born with just a cleft lip after a routine ultrasound.

"I just remember crying and them telling me 'It's going to be OK.' but in my head it wasn't OK," remembers Carley.

For the remainder of the pregnancy, Carley had monthly high-resolution scans to keep an eye on the development. They were told repeatedly that their baby would only have a cleft lip and that the rest of the mouth was intact. But during the moment of delivery, all that reassurance went out the window.

"I was a mess. I was literally like, a mess. I was an emotional rollercoaster. I was blaming myself … In my head it was a birth defect and there's something wrong with my baby and that's all I could think about at that time,” says Carley.

Those kinds of feelings are exactly what Seattle Children's Hospital's craniofacial pediatrician Dr. Emily Gallagher hopes to change for parents during their first visit.

"I think most people feel better within a few minutes because I think we start off by talking about how this is a very manageable problem and they're coming to a team with a lot of experience taking care of kids with this problem and we know a lot about what to expect. So, I think it's a short time before they're feeling much better,” says Dr. Gallagher.

That was certainly true for Carley and her family.

"Once I met them at Seattle Children's it was amazing, like all that was lifted off my shoulders. I didn't feel the burden that I felt like I did this to my child. They were just so comforting and so supportive," Carley remembers.

Once a baby with cleft palate is born, figuring out the best way to nourish the baby becomes the first priority. Once the baby has adapted to alternate feeding it's time to start planning for corrective surgery and an odd phenomenon parents might not expect.

"I always warn parents before they come in for the lip repair around six months that they might feel sad when their babies face has changed when they don't have the cleft lip anymore,” explains Dr. Gallagher.

But surgery on a cleft lip or palate is just the beginning. Experience has taught the craniofacial team that ongoing care from plastic surgery to hearing development and speech therapy can prevent the condition from inhibiting the child's development. The most intensive care is given during the first two years and will benefit the child through adolescence.

"To make sure that their hearing is fine, that their speech is adequate so that they can be well understood, even as they grow that their speech is still fine. And then we're also going to watch them for facial growth, to see if they might need other surgeries when they're finished growing to improve the relationship of their upper and lower jaw,” says Dr. Gallagher.

Luke is still under care at Seattle Children's and Carley has found a community of parents who share their experiences. There are support groups for this and many other conditions for children and families at Seattle Children’s that can be helpful in coping with challenges.

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