(Cleft Lip and Palate)

Posted on 09/08/2014

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I have adopted two children with cleft lip and palate. My son who is now 5 has unilateral cleft lip and palate. My daughter who is two has bilateral cleft lip and palate. I was drawn to adoption after becoming very exhausted with infertility. I wanted a larger family. I will be very honest; I wanted children no matter what. The first time around I was very picky with the special needs I selected. I thought cleft lip and palate seemed easy enough one surgery and done. I was so very wrong about the one surgery thing. Our next adoption I was much more open to many special needs. Special needs no longer scared me, I knew we could handle so much more. Again we were matched with cleft lip and palate. It was much more severe this time but I knew what it required and it was no problem.

At first all the doctor appointments are overwhelming, but soon it just becomes the norm. Once surgeries have started the visits become less and less to once a year. That truly is the hardest part of cleft lip and palate. You have surgeries the first year you are home. Lip repair, soft and hard palate repair and ear tubes. Speech therapy is also very common but its all very doable. Most people say your child has a special need? What? Doctors do amazing repairs these days and scars are minimal.

I would like other parents of cleft lip and palate children to know of their options for surgeries. Palate repairs can be very hard on children, but there are options that require your child to suffer very little pain. I am glad I found a method for palate repair that allowed my children's palate to close on their own and allows their palate to grow with their bodies. Oour children must see a cleft team once a year. At this appointment they meet with the craniofacial surgeon who does the repair, they see an ENT for their ears, they see a speech therapist, and they also see an orthodontist. Together these doctors make the best possible plan for our children. They work as a team in surgery.

Primary Children's Medical Center in Utah treats cleft palates very differently than anywhere in the world. Their method requires less surgeries with quicker recoveries. Our orthodontist has developed a prosthetic palate that is screwed into our child's mouth and allows the natural palate to close on its own. The prosthesis stays in place for about a year. It is then taken out and if the palate has more room to close a new prosthesis is placed, if it is closed they connect the tissues and palate repair is complete. You can read more about this method here.

Although cleft lip and palate requires several surgeries, it is a special need that is correctable. My children may be behind in speech but they are on target with everything else. My son will enter kindergarten next year. He is ready for this and only has 5 sounds left to learn. He has had a lip revision, soft palate repair, and hard palate repair, along with ear tubes up to date. In the next two years he will need a bone graft to fill in his gum line. Other than that he will require orthodontic work and maybe more speech in school. Our daughter has had the same amount of surgeries up to date. I haven't found there to be any differences with bilateral cleft lip and palate. My daughters palate is more open so she has worn her prosthetic longer (my sons palate closed in 6 months). In October she will undergo surgery after having her prosthesis in for one year. We look forward to seeing the progress she has made. Cleft lip and palate is a very manageable special need with so many advances being used for repairs.

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