“It might be corny to say, but I want parents to know it gets better. Pierre Robin can feel daunting, but usually in a year you're sailing,” shares mom Christine.
Christine never imagined calling her daughter’s journey smooth sailing. Maeve was born via emergency C-section in Sarnia and immediately rushed to Children’s Hospital in London because of breathing difficulties.
It seemed Maeve’s cleft palate was causing her breathing issues, but at three days old, Children’s diagnosed Maeve with Pierre Robin Sequence. A rare congenital disorder that gave her a smaller, pushed-back jaw, backward-falling tongue and obstructed airway.
While Maeve’s life began with a whirlwind, her expert care at Children’s Hospital and TVCC was life-changing.
Her mom Christine remembers…
Our teams at Children’s and TVCC have been incredible since day one. They help families like ours understand the reality of Pierre Robin Sequence, and what it means for our children. It’s not as scary when your team explains the entire process!
Meave had cleft palate surgery at just 13 months old and spent a month unable to sleep unless I was holding her. But even with that hard recovery, our teams at Children’s and TVCC let us know exactly how to help our little girl.
We knew Maeve would need continual check-ups with her Children’s surgery team, ear, nose, and throat specialists, dietitians for her G-tube and feeding difficulties, Speech Pathology Services, and multiple physiotherapies at TVCC, among many other talented professionals.
At first, you feel disappointed, you want to care for your child all by yourself so it’s hard to ask for help. But I realized I was being given a village – that’s hard to find these days.
Children’s and TVCC also introduced us to families like ours. They pair Pierre Robin babies as hospital roommates! As parents, that means our village gets even larger.
We still keep in touch with her first roommates! We went to African Lion Safari together last weekend and all the girls there had Pierre Robin. There’s nothing more amazing than navigating through this journey and diagnosis together.
Alongside world-class medical and rehabilitative care, TVCC and Children’s Hospital bring hope to families through an incredible sense of community. Hope lives in community.
Today, Maeve is active, smiley and almost two! She continues sailing through milestones and growing stronger every day. Maeve and her family come for a variety of check-ups every 6 months and are continually grateful for the best care at Children’s Hospital and TVCC. Because of expert care and community, hope lives at Children’s.
