Cleft lip & Palate

I wanted to write a post to give a brief introduction about cleft lip & palate which little vivi was born with. The China Waiting Children program is an adoption program in which you adopt a 'special needs' child. Cleft lip/palate is considered a special need and many many children adopted through the CWC program are cleft affected. It is for most people very manageable and here in Canada all therapies/surgeries required will be covered by our health coverage.

The Hospital for Sick Children's Cleft Lip and Palate Program describes it:

What is a Cleft of the Lip and/or Palate?

A cleft is a separation of the parts of the lip or palate (roof of the mouth), which usually fuse together during the first three months of development. If the parts, which make up the lip and palate fail to meet and fuse, there will be a space between the parts, which is called a cleft. The type and severity of the cleft will vary from child to child. A cleft lip can vary from a slight notch in the red part of the lip to a complete separation of the lip extending upwards into the nose and backwards through the gum line (alveolus) and palate. A cleft palate can be as small as an opening at the back of the soft palate to a large opening of the roof of the mouth.

Vivi was born with an Incomplete Unilateral Cleft Lip and Palate (middle image). 

 Nicole from the blog Living Out His Love is allowing me use what she has posted when she and her DH adopted their little one with a similar cleft to vivi. It was her blog that I first read about clefts while we were just starting to explore adoption for our first child. This blog was a blessing in my life as I learned about clefts and adoption and how they fit together. So thank you Nicole! Sunshine joined their family when she was just over a year old and had not had any surgeries. This is her!

Sunshine

I imagine our little one would have looked similar as her cleft was on the same side. We don't have any photos so its impossible to know.

Cleft lip/palate requires surgeries. Nicole describes talks about this on her blog:

"Sunshine had a total of three surgeries her first year home and then will have several more after that in coming years. That includes 2 lip repairs (a simple lip adhesion, then a more complex one involving her nose) and a palate repair. She’ll need a nose revision after 5 years old and eventually a bone graft at age 9 or 10 to fix her gum line.  She'll also undergo a "real" nose surgery (that will include breaking bones, ugh) around age 16.  6 surgeries total, assuming that nothing goes wrong in the process to require more repair surgeries. And then there were the daily lip massages after the lip repairs and the seemingly never-ending dental work that hopefully will not require more surgeries." Here is Sunshine after her lip surgery. 

Here is vivi a few months after her surgery. I really wish we had before pictures. We are hoping maybe the orphanage has some that we can get when we visit in April.

As far as we know, vivi has only had one surgery so far, and she will likely require many of the same surgeries as Sunshine. I'm so glad to have resources like Nicole to learn about clefts so I can prepare my heart for what is yet to come. Nicole describes some of the work they have done with Sunshine to get her caught up to her age:

"There's also speech therapy, and she had months of therapy for physical delays. Because of her mouth's physical limitations, she is speech delayed.  So we used American Sign Language almost exclusively for communication for about a year and a half.  Although difficult at first, communicating through ASL was very effective and well worth the effort.  She was significantly verbally speech delayed for quite awhile, but the 60 signs she used to communicate worked extremely well.  I am happy to say that her verbal speech is starting to explode, thanks to her wonderful speech therapist and hours worth of work at home.  ST started a few months after her palate repair to allow enough time to heal.  Sunshine is such a hard worker and is so determined!  Her articulation can be difficult to understand, especially out of context, but her improvement is very significant!"

 We plan on learning sign language as well, at least a bit, especially after reading how helpful it can be if speech is delayed as it most often is for cleft affected children. We ask that you, our family and friends are patient with vivi as she not only gets to know English as she starts to hear it from us on our trip to China, but also as she deals with surgeries and the changes that will occur in her mouth. The hospital will assess her within a few weeks of coming home and we will know much more about next steps after that appointment.

Final thoughts from Nicole:

"But, cleft lip and palate as the “minor” special need we set out thinking it was? Maybe the surgeries, speech therapy, etc. do not sound that bad “on paper” (they didn’t to me), but I can assure you that going through it for Sunshine is not “minor,” especially while also learning to attach and transition into our family.

Fortunately now, two years out, we've hit our "normal."  The weekly speech therapy sessions are routine, and I am used to creating therapy moments out of every day conversation.  There is still much more of a journey for our Sunshine, but the worst of it is certainly over.  I am honored to walk alongside her through all of this, and love watching her grow!"

At the end of the day we know we will do whatever it takes to catch vivi up just like Nicole and her family did for Sunshine. I just can't wait!! 42 days until we meet vivi! Mama is coming for you!!

References:
http://www.sickkids.ca/CleftLip/What-we-do/index.html
http://www.livingouthislove.com
http://www.choa.org/child-health-glossary/c/cl/cleft-lip-and-palate_kh_parent