February 10, 2010 Lilah's Journey, tessier cleft 0 Comments

by Paige, mom to Lilah from China with a SN of Tessier Cleft

In April 2007, while attending a ladies morning out program, an advocate from Compassion Canada came and spoke to us about international adoption. While sitting there, God spoke very clearly to me and told me “It is time”.

I immediately went home and began researching international adoption and Christian Adoption Services. I very quickly was led to adoption in China and it instantly felt like the right place to be looking.

It took me five days to talk to my husband about what I was feeling, but when I did he was more open to it than I had expected him to be. (I had been praying for five days for God to open his heart to what I had to say). My prayers were answered. He took a few days of praying and thinking, and his heart was opened and he and I could be completely excited about this together!

I have always felt we would adopt at some point. It was something we talked about doing “someday” quite often. After having four kids, it felt like we should be done. God had other plans for our family… The moment he told me it was time, I felt ready in every way and knew there was an empty spot in my heart for this new little girl.

The wait time is almost unbearable… We were logged in the regular program September 25, 2007 and slowly the wait time grew and grew and it looked possible we wouldn’t see our daughter until 2015! In May 2008, we switched to the waiting child program and we were instantly comfortable with our decision and all it would entail. We were told at that time that our wait would be about a year. In July, CCAA changed the way they did the waiting child program and we found out that suddenly we were at the “top of the list”. Since then there have been a few bumps which were very hard to deal with, but we knew that we will see our daughter in God’s perfect timing.

In January 2009, we finally got “the call”! When I saw her I wanted her to be the child I was waiting for, but was not sure how my husband would react. Her paperwork stated that she had a cleft lip and a right eye deformity. When we went over the paperwork together we felt completely overwhelmed and weren’t sure if this type of medical condition was something we could handle.

God gave me a verse that day in my devotions. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart. — 1 Samuel 16:7. After talking to some family and close friends and just taking some time to think, we sat down with each other and told each other that this was the child God meant to join our family.

My husband is a Plastic Surgeon, and so we had asked for anything Plastic Surgery related. When he first looked at her picture he knew that is was more complicated than her paperwork indicated and that there would be many unanswered questions until we could get her home and seen by many different doctors. Lilah was born with Tessier 4, a unilateral craniofacial cleft that runs from her lip, up along her nose and into her tear duct. These clefts are numbered from 0 -14 to indicate the location and extent of the cleft. Tessier clefts involve not only the mouth and the nose, but also the rest of the face. It may involve a split in the bones and skin or a misshapen facial feature.

We went to Gaungzhou in May 2009 to get Lilah. She had been in the care of True Children’s Home since she was three months old. She had surgery to repair her cleft lip when she was eight months old and was then placed into foster care (which was overseen by TCH). Lilah had just turned two years old. Her adjustment to our family has been amazing, but with a few bumps along the way! She is a very strong willed and smart little girl. She is doted on by her parents and her four older siblings!

There was a lot of issues that her paperwork never mentioned. She has a very misshapen head, but it has nothing to do with her cleft. She is iron deficient and has been put on supplements. Her cleft is not genetic and shouldn’t be an issue when she decides to have children of her own. She is very small, but because everything is proportionate, the doctors are not worried about it. We weren’t sure if her palate was affected, but it is not.

We are still waiting to see what and when her surgeries will be. But they will be big. She now wears glasses, as her right eye is very farsighted. The next step is to get a CT scan to see exactly what it looks like under the skin. The first surgery will be to build up the bone in her cheek, and at that time they will put in a tissue expander to stretch the skin, so that they can repair and make a new lower eyelid. At this point, I don’t have a time frame for her surgeries, we are taking it one day at a time and one step at a time.

But I do have to say this… Lilah is amazing. She learned English within the first two months and speaks in full sentences and can carry on a conversation. Her speech is clear. She has great motor skills and tries to write letters and draw shapes. She runs and spins and dances. She is very affectionate and loves to be held and read to. She is now potty trained and she sleeps like no other child I have ever had! She does look different and the biggest adjustment has been how to deal with the stares from strangers. But, we have not had to deal with speech therapy, developmental or physical delays of any kind. She is a perfect, healthy, intelligent and beautiful little girl. What a gift!

Feel free to visit our family blog here!

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.