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Cleft Lip & Palate Awareness Week

May 6 - 14, 2017, is Cleft Lip & Palate Awareness Week and I want to take this time to share our story with you all. When I was 21 weeks pregnant with our second baby, I went for a routine ultrasound which I was primarily just excited to find out whether we would be having a boy or a girl. We were excited to find out that we were welcoming another baby girl, and then were told by our doctor that our bundle of joy would have a birth defect called a cleft. At this point, I had no previous knowledge about clefts, and we were unaware whether or not the cleft would be of just the lip, or if the palate was involved as well, and having this new knowledge, we wanted to know how it all happened.

We were sent for appointments at the hospital with a genetic councillor, and then introduced to our Cleft Team which we will be working with for years to come. We were told that the cleft was not likely genetics and that we did nothing wrong to cause the cleft - sometimes this just happens with no environmental or genetic influences at all. To confirm the diagnosis of the cleft, we had another ultrasound, which they wanted to follow up on 4 weeks later. During that time, we went for an Echo Fetal Ultrasound to make sure nothing was wrong with baby's heart, as clefts are commonly associated with congenital heart disease. The Echo Fetal Ultrasound went well and we were told our baby appears to have perfectly healthy heart. After our follow up ultrasound, the doctors were concerned about her head size, and brought us back for a follow up to keep an eye on the baby's growth. Next appointment showed a normal head size but a small abdomen - cue a follow up appointment... next appointment was a small head circumference and a normal abdomen. These appointments went on for the latter half of my pregnancy, ending with a conversation about possibly inducing labor. Fortunately, baby came on her own and arrived on her due date at 6lb 5oz, no medical intervention necessary. After these many ultrasounds and concerns, you can imagine our relief when our beautiful baby, Anastasia Marie, was born with a cleft of her lip and alveolar ridge (aka gum line), and was otherwise completely healthy.

Her palate was intact, but still with a cleft in her lip and alveolar ridge, nursing was a challenge. I was sure she was going to need her specialty feeding bottle that was provided by her Speech and Feeding Pathologist. She refused a regular bottle and nursing was hard! After several appointments with her feeding specialist and a lactation consultant, we learned the best ways to work together and Anastasia has been nursing, bottle free ever since. Due to suction problems, many babies with clefts are unable to nurse and have to use one of the many specialty feeding bottles available.

Anastasia had her first surgery when she was 5 months old, which repaired the cleft in her lip. Her plastic surgeon did an amazing job, and Anastasia stayed so strong and healed incredibly well. Because she was so young, she needed to wear splints on her arms for 3 weeks to keep her hands away from the stitches in her mouth. Here we are three months later, and people who meet Anastasia for the first time would never know she was born with a cleft lip. Due to the cleft in her alveolar ridge, she will require another surgery sometime in about 5 years, and most likely orthodontic work down the road. Her next surgery will be a bit more invasive and will involve a bone graft from her hip which will be used to build part of her upper jaw.

We have worried every step of the way, with what to expect and how Anastasia would do with everything, but Anastasia has shown us time and time again that she is a strong girl that will let nothing get in her way. I know she has a great future ahead of her and though it has come with it's own special and sometimes scary experiences, I love that Anastasia has blessed us with TWO beautiful smiles to fall in love with.

When Anastasia was born, I started a small online shop called Ari & Ana. I sell baby and toddler accessories, and donate $1 from every product sold, to Operation Smile, to help raise awareness and help fund cleft repair surgeries in third world countries. We are so fortunate here in Canada to have a great healthcare program and an amazing cleft team to work with. Many countries do not have these resources and children often become isolated away from society, and develop further health and development issues because of their clefts. Operation Smile works with children and their families to repair clefts and help bless more families with a second smile and a better future. You can visit www.operationsmile.ca to learn more and make a donation - and please visit my shop at www.ariandana.com to check out some baby accessories that help support this great cause. 


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