ACPA Family Services

Cleft-Craniofacial Community Stories

Cora’s Story

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After six years of trying to start a family, we were overjoyed to learn that I was pregnant with our first child. Just as any normal expecting couple, we prepared as best as we knew how – stocking up on bottles, diapers, and clothes. At a routine ultrasound, we discovered we were having a girl! We couldn’t wait for the day to meet our daughter, and we imagined what she would look like – would she have my nose or would she have my husband’s eyes?

When the time came for the birth of my daughter, our world changed forever. When I heard her first cry, I was waiting to hear the words, “It’s a girl!” Instead, I heard the doctor announce, “It’s a cleft,” as he showed my daughter’s face to me for the first time. Cora had a unilateral cleft lip and palate.

Cora struggled to eat. The nurses tried bottle after bottle, but she choked with each one. She was losing weight, and the hospital referred us to a feeding specialist. In those early days of my daughter’s life, I remembered thinking, “Ok – we’ve managed to keep her alive for another day.” We felt helpless in trying to feed her. In fact, I could hear her stomach growl as she cried for food. We were unsure of next steps to help our daughter or what the future held for her.

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Thankfully, the feeding issues were solved when we met with the feeding specialist who gave us techniques on the best way to feed Cora. She gave us a Pigeon nipple that fit on top of a normal bottle, and our daughter took to it instantly – no choking!  We were relieved to see her drink down 2 oz. of formula in minutes, rather than struggle an hour or more! (We later had to special order the Pigeon nipple from Japan!) The specialist also gave us invaluable resources from the Cleft Palate Foundation (now ACPA Family Services) from feeding techniques to preparing for upcoming surgeries. Those resources directed us to our team of doctors that set up a plan of treatment for Cora. Until we met with the team, we had no idea that cleft lip and palate can be associated with numerous syndromes and can affect speech and hearing. In Cora’s case, it also affected her sight.

Cora had her first surgery at three months old to repair her cleft lip and to insert her first set of ear tubes. Having the ability to hear clearly for the first time, Cora had a hard time adjusting, but eventually grew accustomed to the new sounds of her world.

At six months old, she had her palate repair. It was after this surgery that our daughter struggled with eating again. We had to resort to feeding her with a medicine syringe so that she would not suck too hard to pop the stitches, but within a week, she was back to eating normally.

Cora began speech therapy as soon as she started talking, and today, at nine years old, she doesn’t have much nasality in her speech. Between cleft and palate revisions and ear tubes, our daughter has had ten surgeries to date with number eleven, her bone grafting surgery, scheduled later this month.

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Early in school, many of her classmates questioned the way Cora looked. And she would answer any questions they asked. Unfortunately, as she has gotten older, she has experienced bullying, and we’ve seen her become more self-conscious about her appearance. Her teachers and therapists have been a great resource in helping to build her self-esteem.

Despite all that she has been through, Cora is an energetic, healthy young girl who hasn’t allowed her circumstances to slow her down. She loves to spend time with her friends, swim, and draw.

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