fearfully and wonderfully made {my daughter’s cleft lip & palate}

In May of 2011, we were in the initial stages of paperwork to begin an open domestic adoption. And then my friend sent me a picture of her little girl. I found myself staring at the computer screen. Captivated by my friend’s daughter. A healthy baby girl with a cleft lip and palate. And in that moment I knew ~ I had a daughter in China and she had a cleft lip and cleft palate.

I knew it in the deepest parts of me. The parts you don’t tell anyone, you just tuck it away.

A little secret between me and God – we knew.

In June 2011, Chris and I changed plans and began the paperwork to pursue a ‘special needs’ adoption from China. There is a medical checklist that has about 100 things you must select if you are willing to accept in a child or not. We filled it out. We selected box after box of medical needs we were ‘open’ to (what a horrible process that I am not even going to get into here). But in my heart I knew it didn’t matter what we did or did not select. We had a daughter in China with a cleft lip and palate. That same month a beautiful baby girl was born in southern China with a cleft lip and palate.

For reasons I don’t know, very shortly after her birth she was placed in the care of the county orphanage. Her family experienced tremendous loss.

8 months later at 8:50pm on a Monday night, we received an email from our agency stating we had been matched with a child.  We opened the first photo to see a gorgeous baby girl. There she was – our daughter. And in that moment, Chris knew the secret God and I had been keeping. We had a daughter in China with a cleft lip and cleft palate.

I am already fiercely wild for her. And when it comes to her cleft lip and palate – well, I am both protective and defensive of the wonderfully perfect way she was created in the womb of the mom that gave her the gift of life. One day she’ll be a bit older. She’ll understand that her lips and palate were created a bit differently. I do not know how she will feel about being born with a cleft when that day comes. But, I do know how I feel. She is captivating. She is beauty. She is wonderfully and perfectly made and a week from today I get to kiss those lips.

My daughter was born with a cleft lip and palate. It is part of who she is. While it does not define her, it is part of the symphony being written in her life.

As we have shared her photos with friends and family, we have received numerous questions related to her cleft lip & palate. I have debated over and over for months how I want to address those questions publicly. Ultimately, I have decided to do it here – today. Next week she will be in my arms and I just don’t think I’m going to want to be answering a bunch of questions at that time.

So this is kind of my day to both give you a little more of an introduction to my daughter, answer some common questions and then I’m going to move on in regards to talking about her cleft on my blog much. I will probably link to this post for a while once she is in my arms, as a way to answer questions without having to daily answer questions. I understand that for many people a cleft lip and cleft palate are a bit of an unknown. I get that. I was there once too. For the most part, I am happy to answer your questions (if I know the answer). So feel free to ask in the comment section, but please know I might be a bit slow to answer.

Some of the most common questions we are asked:

What is a cleft lip and cleft palate? What causes it?

Well, this one I am going to leave to WebMD…here is a brief definition:

“Cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy, while the baby is developing inside the mother. Clefting results when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly. A cleft lip is a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. This separation often extends beyond the base of the nose and includes the bones of the upper jaw and/or upper gum. A cleft palate is a split or opening in the roof of the mouth. A cleft palate can involve the hard palate (the bony front portion of the roof of the mouth), and/or the soft palate (the soft back portion of the roof of the mouth).”

Our daughter has a right unilateral cleft lip and palate

8.12cleft

illustration from KidsHealth.org

Can she speak?

Well, she is only 14 months old…so not really. We aren’t sure at this point what kind of sounds or words she is saying. However, one of the huge challenges she will face will relate to speech. Most cleft affected kids spend several years in sometimes pretty intense speech therapy. Because her palate is not closed (think the roof of your mouth open into the nasal area), she is unable to make certain sounds. Until her palate is repaired (which won’t be for probably 6-9 months), there are just certain sounds she cannot physically make. This will delay her speech and she will face some hurdles learning to make those sounds. We will most likely take advantage of using sign language with her for a while.

 How does she eat?

Well, at this point I don’t really know! I will have to figure that out in the coming week(s). My friend Angie has been an invaluable resource. I’ve also done a lot of studying and reading online. Right now she has only had a combination of formula and rice cereal. Like any baby, once she is introduced to other foods she can eat just about anything. There are a few challenges that go with eating with a cleft lip and palate, but nothing that we can’t tackle together. Because of the cleft she is unable to suck, so we have some special bottles that she can chomp down on to get liquids out. There is a learning curve we will face together, but I’m confident we’ll figure things out.

8.12medela-01

Why wasn’t her cleft lip and palate repaired before the adoption?

Though many children in orphanages are able to have their clefts repaired prior to adoption, many are not. Usually it depends on the location of the orphanage and the amount of outside help (like from non-profits such as Love Without Boundaries). Our daughter is in a very rural area and it is not common for children to receive extensive medical care like a cleft repair. However, the day after we were matched with our Little One, we did formally request that her cleft lip and palate not be repaired. The surgeries and recovery involved are a big deal. Not every adoptive family has the ability or opportunity to do cleft surgeries post-adoption. We do have the means for that to happen, so it was our preference that she be home with us before she endures any surgeries.

How soon will she have her surgeries?

We will wait at least three months before she has her first surgery. Our first priority when she arrives home is not surgery. Our daughter will face a great deal of loss, trauma and grief in the coming weeks and months. She will be leaving the only home she has ever known and the only people she has ever known. She can’t see the big picture – she is a baby. We want her to have time to begin healing emotionally. We want her to know security and love. We want her to be ‘home’ physically and emotionally before she endures surgery. We will not initially know how to comfort and soothe her. We want time as a family to bond and attach before she undergoes more trauma in the form of a surgery.

Our daughter will most likely have a minimum of 5 surgeries over the course of her life. She will have 2 surgeries during her first year home. Another surgery around age 5. Another around age 8. And another one around age 16. And that is often the minimum. Many times more surgeries are required. For most of her growing years she will regularly see a team comprised of a surgeon, ENT, dentist, orthodontist, and speech therapist. Though surgical corrections of her cleft lip and palate are necessary for her long term health – we, along with her surgeon, want her to have time to get overall healthy before we begin treatment.

Amber teething necklace…hoping this will help with some post-surgery comfort

(and it’s cute…and her Chinese name means “amber”…so that is extra fun)
8.12amber-1

Those are the main questions that are coming to my mind right now. I am sure there are more. Maybe I am missing a few, but you are welcome to ask them in the comment section. And, I will point out, I am still learning all this too. I have so many of my own questions and I am so thankful for other parents who have shared their knowledge with me.

For those of you that have been reading my blog regularly for the last several months, I am sure this post comes as no surprise.  I also know it is a little mean not to share a photo today, but I really want to wait until she is in my arms.

So…next Monday, get ready meet my Little One!!!!

Oh my goodness – next Monday!

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