My husband was born with a cleft lip and palate and when we decided it was time to expand our family we always knew our chances of conceiving a child with the same condition were going to be higher. Our 20 week anatomy scans were always done by doctors (not technicians) so they would be able to conduct a more thorough exam and diagnosis whether or not the child would have a cleft right away. It wasn't until our third child, Beau that we were given the news our son would be born with a bilateral cleft lip and palate. I remember leaving that appointment and I couldn't stop crying. Honestly, I spent most of the remaining 20 weeks of the pregnancy finding myself crying on and off so worried about what Beau had in store for him. Thankfully I had my husband to rely on. His experience of what he had gone through (surgery, bullying, speech, etc.) helped me to better prepare mentally for what Beau would have to experience. Each cleft journey is so unique and even to this day I still find myself concerned for what lies ahead for Beau in his development through speech, dental procecures and future surgeries. Like with any child, I don't think you ever stop worrying about the future but we do our best to prepare and take each day of his journey one step at a time.
Once we received Beau's diagnosis I relied heavily on my husbands experiences and his family. The advice on feeding was especially helpful and the little tips and tricks they used (like buying ALL of the burp cloths) came in handy for when Beau was born. At the time a friend of mine introduced me to her neighbour whose child was also born with a cleft. We chatted for months leading up to Beau's birth and her knowledge on feeding products, crib accessories (a wedge put under their mattress to help elevate the child's head to help with reflux) was especially important for me. I felt prepared for Beau's arrival through all the different resources that were available to me. I was guided to a Facebook group, Cleft Mom Support and Cleft Mom Support Canada which was an overwhelming wealth of knowledge on so many different aspects of having a child born with a cleft lip and palate. It felt so great to connect with other families who were going through all the same experiences I was about to go through and know that I wasn't alone. We decided against the amniocenteses that was offered to us through the genetics department at the hospital as the risk for miscarrying (I have had two previous) was to great for us. We opt'd for genetic blood testing to be done after Beau's arrival and all markers for any other conditions came back negative.
My advice to other's who have received the diagnosis of their child being born with a cleft lip and palate is to breathe. Take it one day at a time and enjoy your pregnancy. Not all families learn about their child's cleft during pregnancy but if you do research, learn, study the best you can. I found the more prepared I was drastically helped with my mental health after birth. Those first few weeks when your baby is born will be hard, they will be overwhelming but know that you will find your support system and to reach out to others who have gone through this experience before. Ask your hospital to put you in touch with other cleft families. The Cleft Community is a fantastic, supporting, loving group of families and we all are here for one another.
Below is a timeline of Beau-Bo’s observed symptoms, diagnosed conditions, and treatments and therapies.
Observed at 3 months
Observed: Once a Month
Because Beau has a complete cleft lip (meaning the split in his lip goes through his gumline) when the tooth form in his cleft there is no bone to attach too meaning, his teeth will likely come in crooked. Currently, Beau's tooth that has grown in his cleft is completely crooked (since 3 months old).
Observed at 1 year
Observed: Once a Day
Because of Beau's complete palate (which was repaired June, 2020 at 9 months old) we have to work extra hard on certain sounds like B, P and D. Through our cleft team at the Children's Hospital, we have a speech therapist that assists with teaching Beau how to best make these sounds. He has had great strides in his speech development thus far!