After many years, we're now on a new adventure- sharing here! We're newly learning about cleft needs and challenges, and after being fortunate to be able to learn from other gracious families, I wanted to share the informational email/post we sent out to our friends and family.
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By now you likely know that we are expecting a little one in November, who we've dubbed BuMP for now. :)
While we know that there'll be a lot we'll learn about him after he's born, we did get a heads up on an early diagnosis of unilateral left-side cleft lip and palate (or CLP) which we discovered in my 20-week ultrasound (wow modern medicine!). About one in 700 babies are born with a cleft lip and/or palate, which is over 6,000 babies in the US annually, making it the most common birth defect. The cause(s) of cleft is not definitively known but likely some mixture of chance and genetics, and it's unlikely we could have done anything different to avoid it. We are fortunate that in our case, this appears to be unrelated to any other more complicated genetic or midline deformity issues which can accompany cleft, so we expect him to be otherwise completely healthy.
- What will this mean for BuMP? All signs point to kiddo being just fine long-term and not even remembering he had a cleft by the time he's a few years old. The first year will likely be tough for mom and dad, as the first few months he'll probably struggle to eat enough and may have trouble with his ears, sinuses and nose (since missing parts of a palate mean food/liquids are going to go where they otherwise shouldn't). However, medical care has advanced so much that the cleft is unlikely to affect him having a healthy, normal childhood (or as normal as it will be with his two weirdos for parents:).
- What does treatment look like? We are incredibly lucky to be right next to one of the best hospitals for treating cleft- Seattle Children's Hospital (SCH). Based on our prenatal consultation, the traditional treatment is two surgeries in the first year. Kiddo's first surgery to close the gap in his lip will likely be at about six months of age (probably May 2020), and the second to close the palate will likely be around his first birthday (probably November 2020). Before his first surgery, he is likely to need a NAM, similar to an orthodontic appliance that is kept in pace with tape- this will be visible in photos. The NAM appliance helps shape the nose/palate/sinus tissue so that surgery goes more smoothly and healing is sped up. (Info on the NAM appliance: https://www.seattlechildrens.org/clinics/craniofacial/services/nam) Surgery timeline is dependent on doctors/surgeons getting a better look once he's born, and after the first year doctors will advise on any additional surgeries needed in his elementary, middle school and high school years to address any needs with speech, dental quirks, hearing, etc.
- What can I do to help? Largely, we just need your love and support. Families who have a kiddos with cleft say the first year can be particularly hard with feeding challenges, surgeries and recovery. We may reach out for extra support around surgeries especially with meals, kind words, or helping hands. If you have questions about cleft, the NAM, his surgeries or anything about the process, please feel free to ask. Also know the parents may need a break from talking about it and may defer to answering at a later time. This isn't because we don't want to share with you, but because we're likely to get a lot of questions and it may get emotionally taxing to both care for baby and help educate our community. There's also a lot to learn on the internet about cleft if you do some googling on reputable medical sites!
- Where can I learn more? The CDC, Mayo Clinic, and Cleft Lip and Palate Association have been great resources for us.
- My first stop would be here: https://www.cdc.gov/ncbddd/birthdefects/cleftlip.html
- I also really appreciate this blog post geared toward parents who just got a diagnosis https://thestorybehindtwosmiles.com/2019/09/10/to-the-mama-who-just-received-her-childs-cleft-diagnosis
- Mom has also struggled a bit getting used to photos of cleft babies, and have started following the account and hashtag #cleftcuties on Instagram. This has helped me acclimate to seeing cleft babies as normal, dynamic kiddos instead of my brain getting stuck on just that gap in their lip. And there are some adorable little ones on there! Folks also sometimes share their "forever smile" stories about surgery and recovery, which has been helpful for me to learn and normalize.
- The New York Times recently published an article called “What Different-Looking People Would Like You to Know Before You Stare” which has some great food for thought around all physical differences https://nyti.ms/2OQBkg7
As always, thank you for being part of our life and our little one's journey. We are incredibly grateful for your love and support, and we're excited to introduce little one to his many loving supporters when he decides to join us.
Love,
Mom, Dad and BuMP
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