They say Cleft lip and palates are one of the most common birth defects. I don't believe that. For them being so "common" nobody knows much about it, which is why I will preach until the cows come home. I remember being a scared mother, whose son was just born with a cleft lip and palate and we had no prior clue. I was so lost. It seemed almost every nurse I had contact with was also lost. I had one, amazing, nurse who I will NEVER ever forget, Ms. Norma, She advocated for us and helped us. She was amazing!! Over the past 2 years I have met many people in the medical profession and even in daily life who have no clue why my son looks different or what a cleft even is. That's not very "Common" now is it.
First, I'd like to share some statistics about cleft lip and Palates.. I'll site my resources at the end.
~clefts occur in approximately 1 in 700 babies yearly!
~ It occurs twice as often in males as it does in females.
~ Approximately 30 percent of cleft deformities are associated with a syndrome, so a thorough medical evaluation and genetic counseling is recommended for cleft patients
~ Multiple surgeries and long-term follow-up are often necessary
~ There are many long-term complications with clefts, as in Breathing, Feeding, Ear infections and hearing loss, Speech and language delays, and dental problems.
( You can find the source of all my facts here and here )
There are two kinds of clefts, Unilateral (One side) and Bilateral (affecting both sides of the lip). Our son has a Unilateral cleft lip and palate.
Some clefts can be diagnosed by routine ultrasound, others, like ours, is a complete surprise. I'm not sure why. To this day I don't know why it happened. I have my suspicions, but I have no concrete knowledge, and I may never, which is something I will have to learn to be okay with. Before I knew I was pregnant I was given a medicine, that medicine is known to be harmful if you are pregnant and can cause cleft and craniofacial abnormalities. Turns out I was pregnant, though, while I was taking that medicine. I'm not 100% positive that caused Wesleys cleft. It may have been just a 1 in 1,000 chance. A random happening.
Clefts are not a "one fix wonder" It's not a simple "couple surgeries and he's a normal boy" like we were told and many believe. Wesley, at 2 years old, has had 3 surgeries, not counting ear tubes. He has at MINIMUM 1-3 more but it could be even more than that as the years go on. It all depends on his mouth, situation, and how his body heals. Along with surgeries he has major speech issues, ear infections, and possible hearing loss due to the constant ear infections. We spent the first year of his life battling ear infections constantly. When I say 'constant' I mean, we would get over one infection, be okay for a few days and then another would flare up. I remember feeling so helpless and stressed because there was nothing I could do to stop it. He will have dental issues. Orthodontics, bone grafts, teeth extractions, palate widening.. many many more procedures. He had his palate surgery (To close the palate) and his palate cleft was so wide that they couldn't fully close it and he -still- has a hole in the roof of his mouth that will remain until he is 6-8 years old. Along with medical care he also has extreme anxiety. He doesn't tolerate anyone but a select few. I can't leave him. I can't put him in a daycare or a babysitter. If "the chosen ones" can't babysit, my husband and I don't go out. It's been since January since my husband and I have been alone together. Our "Chosen ones" as I call them, have lives and are busy. It's not as easy as hiring the bored teenager down the street. Hopefully here soon we will be starting therapies to help ease that for him but for now, we wait. He sees a therapist once a week for speech. It's not a "one fix and he's fine" situation like many believe. It's a LIFE.
This year for Wesley's birthday I asked everyone in Lieu of gifts to donate to a wonderful program called CleftAdvocate. You can read about them and their mission Here. They have been a source of amazing support and encouragement in the last 2 years to us and I want to give back to them! They are an amazing community of people ready and willing to help, support, and advocate for families dealing with cleft and craniofacial issues.
They have not only been there to support us in those very scary first few days of Wesley's life but they have helped provide us with tips on feeding, tips on surgery and recovery. They have been there to say "I understand" when there was a bad day. They have made the past two years not as lonely for us. It's a very lonely life. I don't know anyone near us who has a cleft lip and palate. It's one of those things you don't really understand unless you have lived it. I don't have a neighbor down the street who has a sister who had a cleft lip. I don't have a relative who knew someone. I have these people, most I don't know and have never met personally, to help me find my way. To help me provide my son with amazing care. To tell me to ask Doctors questions that I wouldn't think to ask. To suggest procedures that will enhance his life. I get to see pictures of all their beautiful babies and realize I'm not alone!!! I felt so helpless, so lost, so alone, after Wesley was born. I didn't know what to do. What to ask or how to ask it.
We don't view Wesley's birthday as 'Please bring us gifts"... We view it as "Come CELEBRATE with us!, come watch what we've accomplished!!!" My son doesn't need "stuff" His heart will not be broken if he doesn't have 45 trains. What he -does- need is this amazing community around to continue supporting us and even -him- as he gets old enough to access the internet. Teenagers who have Clefts need support. You remember being a teenager! It's difficult. People are MEAN. I want my son to have access to people who support him regardless, Who understand what he's going through like nobody ever will.
Wesley is 2. He won't remember oodles of gifts for his birthday. I'm not being a "mean mommy". I'm not being a "stick in the mud". I'm being a mother that is saying no more STUFF and let's focus on what MATTERS, which is celebrating what we have accomplished the past two years! I know this puts people outside their comfort zones, what? no gifts?!, but I'm asking you take a step outside of that comfort zone and let's do something awesome for an amazing group!
I've asked our family and friends and I will ask my bloggies.. Would you consider donating to this amazing program? Even $5-10 helps greatly! I gain NOTHING from this. Not one penny. I have not been asked by Ameriface or CleftAdvoate to promote them or give to them. I am doing this because I WANT to. I LOVE the community and people and want your help to give back to them! Anything you give is tax-deductible. They have been there for us, supported us, helped us gain information and knowledge and honestly, I would have been lost without them! If I could donate $4,000 myself, I would. But I cannot so I am asking you all, Would you consider donating, even $5, as a gift to Wesley and a gift to us to help them continue their work.
You can find more information about CleftAdvocate and Ameriface right here and for those that wish to donate you can go here. For those friends and family near by I also have donation envelopes.
Thank you all so much for your support of us and our son the past two years. It means more than you will ever know!! If you are interested in reading Wesleys Birth Story you can check that out here.
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