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

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 palete, 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 85^th percentile for size and dropped to the fifth because she was having her feeding problems.”

Helping Lucy thrive

Lucy had her first surgery at three months old to repair her lip.

“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 she needed the surgery, but at the same time it was emotionally devastating to hand her over, a tiny little three-month old baby. 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, and her voice was different… it was very emotional. We were full of grief about her face changing. We loved her smile. That was the smile we knew and fell in love with.”

Lucy quickly grew from the fifth to 90th percentile for size. Another transformational result from this surgery was her ability to hear. At the same time Lucy had her lip repaired, doctors gave her ear tubes.

“I don’t know if the doctor would even know what an amazing impact that had. She mostly cried all the time, from birth until her first surgery. She was barely hearing anything. 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.”

Lucy 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 her surgery, she could speak clearly and without any issue.

Lucy today

Lucy is now six years old and in grade one (shown at age five in the image above). She’s living a happy childhood, and she is supported and healthy.

“They had sharing day at Lucy’s kindergarten (last year), 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.”

Children’s Health Foundation of Vancouver Island funds programs, services, and equipment at the Queen Alexandra Centre for Children’s Health, which is home to the cleft lip/palate clinic in Victoria. The clinic is operated by Island Health, and includes plastic surgeons, ear nose and throat specialists, speech-language pathologists, orthodontists, pediatric dental specialists, audiologists, and nurses, among other great supports.

The Foundation works to ensure all Island kids like Lucy have access to the health care they need, when and where they need it most. This includes ongoing developmental supports for the day-to-day health care of kids and their families before and after surgeries.

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