‘I love Lucy’: A Victoria family’s journey through cleft lip and palate diagnosis and treatment

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Danielle Green learned her family’s life was going to change during her ultrasound at 18 weeks pregnant. Physicians detected her baby Lucy would be born with a cleft lip.

“We were fairly distraught. I had never met anyone with a cleft lip. I had no idea what that meant. I am a pretty private person and I initially didn’t want a team associated with my baby, but then we became very grateful for the help QAC (the Queen Alexandra Centre for Children’s Health) was able to offer us. And we were shocked with the number of specialists that Lucy was going to have to see over time.”

Baby Lucy was born with cleft lip and palette, which, among other issues, makes it very challenging for babies to feed.

“It would sometimes take me an hour and a half to feed her an ounce of milk. We were doing it around the clock. When she was born she was in the 85th percentile for size and dropped to the 5th because she was having her feeding problems.”

Helping Lucy thrive

Lucy had her first surgery at three months old to repair her lip and gain ear tubes.

“I was always suspended between gratitude and grief. I was so grateful that these services were available to Lucy and covered medically, and we knew, developmentally, that she needed the surgery. But at the same time, it was emotionally devastating to put her in an anesthesiologist’s hands and watch her go unconscious. And when she woke up, she was in pain, had croup from intubation, we didn’t recognize her, her voice was different… it was very emotional. But the surgeon Dr. Rebecca Morley was amazing. She was lovely during consults with us, and I felt like she had a conservative approach to surgeries. We feel like the team works really well together with what’s best for Lucy developmentally.”

Lucy quickly grew from the 5th to 90th percentile for size. Another transformational result from this surgery was her ability to hear.

“[Before the surgery] she was barely hearing anything. She mostly cried all the time, from birth until her first surgery. Then our whole world turned around. Watching her fully hear for the first time was amazing. She became so much more interactive. When she came home it was amazing, we would close a drawer or use cutlery and she would shake because she had never heard all those little sounds before. And our voices… she reacted to them times a thousand. It was such a cool connection we got with her, and clearly so important for her development.”

She then had a second surgery at 13 months old for palate repair. Danielle recalls how vocal and chatty Lucy was at that age. She was ready to talk but couldn’t make all the sounds she wanted to, prior to surgery. After that, she could speak clearly and without any issue.

Lucy today

Lucy is now five years old and she’s just finished kindergarten. She’s living a happy childhood, and she is supported and healthy.

“They have sharing day at Lucy’s kindergarten, and one day she brought in her baby book, which we called ‘I love Lucy’. She shared it, and told her whole class about her cleft and surgeries she had. She was so proud and so excited. The teacher put it out at break time and a bunch of the kids went and read it.”

Lucy will need more treatment as she grows, but thanks to the services and support available to her and her family, including her team at QAC, she will be able to live a normal life.

“Lucy was born with this circumstance that could have been a massive obstacle in her life, but instead it’s a story that we celebrate as a family because she was able to work through stages of babyhood so successfully. And that wouldn’t be a story of celebration in our family if we weren’t able to access all that support. We look back at her infancy and we celebrate it. We look back at everything she went through and we celebrate it as part of who she is instead of it being a lifelong limitation.”

 

Thanks to our generous donors, we can support Island kids like Lucy. Consider donating to the Kids First Fund today.