Morgan's Story: Coping With Cleft Lip and Palate


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Giving birth to my daughter, Morgan, 11, was relatively easy compared to her older brother. The labor was only five hours long compared to the 21-hour long labor I endured with my first pregnancy. Yet, the moments and hours after her birth weren’t filled with that same relief and joy, but rather fear, uncertainty and disbelief.
 

As the doctor put Morgan on my stomach, he pointed to her lip and said, “She has a tiny cleft lip. Sometimes that’s happens.”

I was unable to fully process the words he spoke, but the hole in her lip was unmistakable. I held my newborn daughter as my husband cut the umbilical cord. He snapped photos, recorded video and made phone calls to let family members know that she had arrived. There was a flurry of activity around me. Yet, I said nothing. I simply stared at my daughter and the hole in her lip in stunned silence.

Morgan was born with a unilateral cleft lip and palate, a birth defect in which the lip and roof of the mouth are open, occurring in about one or two of every 1,000 babies born in the United States.

Learning to feed morgan_before_0148.jpg

The first few hours and days were frightening as we learned to feed our daughter with a special bottle. She turned blue if she took more than three sips, and she choked and needed to sit up and cough frequently every time she ate. Feeding her was terrifying in those early days, but we quickly became comfortable as the days turned into weeks.

Unable to breastfeed, I pumped milked every two to three hours, and continued pumping until she was 9 months old.

Because of feeding issues, most babies with cleft lip/palate have trouble gaining weight, yet Morgan thrived and grew normally.

Letting go of guilt

The hardest part for me in those early days was learning to let go of the guilt, which was overwhelming. Had I done something to cause Morgan’s birth defect? I could have eaten better while pregnant. I should have taken better care of myself and eaten more vegetables. Did I forget to take those prenatal vitamins one too many days?

Carrying around that guilt was a huge burden. I cried often.

It took several weeks to come to terms with her birth defect and accept what her pediatrician told me: “You did not cause her birth defect. You could not prevent it.”

To cope, I went online and did research. I learned everything I could about her birth defect and upcoming surgeries. I looked through galleries and hundreds of images of children after their surgeries. I was comforted by the fact that one day her very visible birth defect would be less noticeable.

Seeing other children at the hospital, many of whom were seriously ill, also helped me put her birth defect in perspective. Cleft lip/palate is correctable, and my guilt eventually turned to gratitude.

Surgeries & therapy

Morgan has had 10 major surgeries to repair her lip and palate with the first surgery occurring when she was only 10 weeks old to close her lip. Several palate surgeries followed that first year.

morgan_2013_b4_pharyngealflapsurgery_069.jpgAt age 7, she had a bone graft where a bone fragment was taken from her hip and placed in her gum, and most recently (when she was 10), a pharyngeal flap surgery to correct airflow for better speech. As an infant, she had eye stents inserted to correct clogged tear ducts and three sets of ear tubes because of chronic ear infections.

Morgan’s birth defect also required intensive speech therapy, which she began when she was 18 months old and continued weekly until she was 9. No longer needing speech therapy was a huge milestone and accomplishment.

Looking ahead

However, treatment for Morgan’s birth defect is ongoing, and she’ll need additional plastic surgery on her lip and nose as she grows. We’re also beginning consultations with an orthodontist. Her baby teeth aren’t falling out as they should, so she had two extracted last summer and will have five more extracted this fall in preparation for braces. Straightening her teeth will take extensive work and several years.

Fortunately, she has a team of talented doctors through Wake Forest University’s Baptist Medical Center in Winston-Salem and The North Carolina Center for Cleft & Craniofacial Deformities. Her team includes: a team coordinator, plastic surgeon, speech-language pathologist, audiologist, otolaryngologist and orthodontist.

Morgan’s resilience

Through it all, I have been amazed by Morgan’s resilience and strength. She has never once complained about the numerous surgeries or doctor’s appointments. Recovery from surgery hasn’t always been easy and often involved weeks being on soft food and liquid diets. But Morgan copes by knowing her condition is only temporary, and she chooses to focus on friends, family and her hobbies such as reading.

Cleft lip/palate is a part of who she is, but it doesn’t define who she is.

Morgan In Her Own Words

Parents: Darrell Goins & Myra Wright of King
Siblings: Carson, 14, and Jackson, 6.


Birth defect 'not that big of a deal' morgan_recentfamilypict_7012.jpg

Morgan is a voracious reader. She especially loves the "Harry Potter" series. She also enjoys anime, video games, playing piano and flute. I asked Morgan for her thoughts on her birth defect and to share her advice for other parents and kids. Here's what she said:

Q: What impact do you think being born with a cleft lip and palate has had on you?
A: I don't think it's had that big of an impact on me. I don't notice it that often unless I look in a mirror very closely.

Q: Do you worry when other people notice?
A: No. It doesn't bother me. People might ask what's wrong with my nose or lip, and I just tell them I was born that way. I haven't had any problems with people bullying me about the way I look and that does surprise me.

Q: I've always been very impressed with how you've coped with the surgeries and numerous doctor's appointments. Where does that strength come from?
A: I'm just used to it. It's not that big of a deal.

Q: What advice do you have for other parents who have a child with a similar birth defect?
A: Don't worry too much about it. Just support your child. Lots of kids with cleft lip/palate have healthy, happy lives.

Q: What advice do you have for other kids with cleft lip/palate?
A: Stay positive. You are special and you shouldn't worry about what other people think. Surround yourself with good friends and family.

Cleft Lip/Palate Resources

According to the CDC, about 2,650 babies are born with a cleft palate each year in the United States and 4,440 babies are born with a cleft lip with or without a cleft palate. For more information about treatment and services, visit:

American Cleft Palate-Craniofacial Association

Cleft Palate Foundation

The Cleft Lip & Palate Foundation of Smiles

Wide Smiles

 

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