Cleft Lip and Palate? No Big Deal

When Liz and Jason Barnette began the adoption process for their daughter Hannah, the challenges of caring for a child with cleft lip and palate seemed, at first, worrisome. But once home with Hannah, they realized that any struggles they face are just minor details in an otherwise joyous life. 

Deciding to start our family through adoption in January of 2010 was the first of many more decisions that would quickly follow.  In the next three months we would decide on an agency, country, and special needs versus healthy referral program. Each decision gave us a sense of peace as we moved forward in the journey to our child. Holt’s Korea waiting child program was the perfect fit for us. We did not want to wait years for a referral and had heard about the numerous children with mild and often correctable conditions who needed a family. In particular, reading blogs from other families who had adopted waiting children encouraged us to choose the waiting child program; over and over, we read stories about children with medical conditions or disabilities who are now flourishing in their forever families.

We filled out our application in March and then sat down together to complete the waiting child medical needs checklist. While all the decisions up to this point had seemed big, this checklist was a daunting task. While necessary to the process, it also felt quite strange. There is no checklist for biological children!

Some conditions were straightforward and others required research. Some conditions one of us would be open to, but the other, not so sure.  Many of the needs we checked ‘yes’ to were mild and correctable. When we got to the cleft lip and palate section, we realized we both felt really drawn to this particular medical need. As a speech pathologist, I have taken coursework in cleft lip and palate and how it influences speech and feeding.  My husband sells medical devices and frequently works with plastic and oral surgeons. Although cleft lip and palate does not self-correct – and can be very involved – we felt like we had sufficient access to the people and resources needed to care for a child with this particular condition.

A few months later, Holt sent an email to families in the waiting child program with information about children who would be added to the photolisting that week. This was the first email that included a child with cleft lip and palate. It seems a little crazy to say this, but we both felt that our child would have a cleft lip and/or palate, even though we were open to various other needs.  We could hardly contain our excitement that this 6-month-old baby girl might be our daughter!

A Prayerful Decision

Her Korean name was Han-byeol, and she had been born with unilateral, complete cleft of her palate and lip – meaning the cleft went all the way from her nose to soft palate. She also had a small ASD – a hole in her heart – that had closed on its own, as well as intrauterine growth retardation, a consequence of not getting the nutrients she needed in utero. She was, as a result, very small at birth. Her lip had already been repaired in Korea and she still had the little bandage over her upper lip in her referral photo. She had the sweetest little hands and feet that I often stared at in her photo while we waited to travel.

Before we began the process to adopt Han-byeol, we visited our local international adoption clinic, where a doctor reviewed her file and discussed her conditions with us. She would need at least two to three more surgeries and likely require speech therapy throughout childhood. She may have difficulty feeding prior to the repair of her palate. The prospect of multiple surgeries was unnerving, but we had researched the cleft palate team at the children’s hospital where we live and felt confident in the surgeons and the hospital. And that’s all Han-byeol needed, really – a family to love her and give her access to great surgeons and therapists. We could easily provide that for her and so we prayerfully decided to pursue her adoption.

On August 26^th, we were chosen by the Waiting Child Selection Committee to be her parents. We had already decided to name her Hannah.

Facing the Unknowns

Once we were selected, the worrying and wondering began. Was she healing from surgery? Was she able to suck and eat normally? When and where would her next surgery be – in Korea or after we got her?  Each month, Holt Korea would send a well baby report that we would eagerly anticipate. Hannah seemed to be doing well, eating and developing at a healthy rate. But it felt stressful to have so much love for a baby who was so far away from us. We were most worried about when she would have surgery to repair her palate, as it is typically done around the baby’s first birthday.  Hannah would likely turn one while still in Korea, and may have the palate repair there.  We didn’t know anything about the surgeons or even what hospital she would be in for surgery. That was all up to her doctor in Korea. It broke my heart to think I wouldn’t be able to hold and comfort her after surgery.

If Hannah did not have her palate repaired in Korea, she would need to have it done once she was home with us. While we waited for more news, we went ahead and discussed Hannah’s case with Dr. Grant, the plastic surgeon who would perform her palate surgery if she ended up having it in the U.S. He assured us that the medical care and surgeons in South Korea were outstanding. We were very concerned that scheduling Hannah’s surgery too soon after she came home could hurt her attachment with us, but Dr. Grant was familiar with issues in adoption and suggested we could wait at least six months. After talking with Dr. Grant, we felt better about the unknowns and also felt like we had a plan for her medical care when she came home – all of which helped to reduce our anxiety.

I pulled out old textbooks and notes to plan for how to promote language and speech through play. Once we felt like we had prepared for her medical and developmental needs, we focused on reading and learning about attachment parenting.  Regardless of each child’s medical need or disability, helping children adjust and attach to their new parents is the common denominator issue in international adoption. I often found myself worrying much more about how she would grieve her losses and accept me than about her speech development or upcoming surgery. The physical and medical challenges seemed to shrink when compared to bringing a scared toddler into a new world.

Hannah at Home

We finally received our travel call in March of 2011, eight months after seeing our sweet girl’s face for the first time. In February, we were told her surgery could wait until we brought her home. At our first meeting, Hannah held out her little finger to mine and I thought of all those moments I spent staring at her hands in pictures. Her foster mother showed us how she cut the nipple on Hannah’s bottle to help her suck. To my surprise, feeding or caring for Hannah didn’t require any other special instructions.

Hannah did grieve for her foster family, but slowly and surely, she came to trust us as her parents. She had to have tubes placed soon after coming home because of ear infections and mild hearing loss. But both quickly resolved after the tubes. I would catch glances inside her mouth at the giant canyon created by her cleft and be so amazed that she ate and drank so well.  I expected feeding to be difficult and scary. And it just wasn’t.  It was messy, but not scary. The only effect it really had on her eating was the stray noodle or green bean she would sneeze out after every meal. And that was pretty entertaining actually, especially for her daddy.

Her palate surgery was scheduled for August and while we dreaded the day, we knew it would help her communicate. Without her palate closed, she could only make the “m” and “n” sounds and she was trying to say so many things. Surgery and the two weeks after were difficult! We were not prepared for how hard it would be to see Hannah in pain and not able to eat – and she LOVES to eat!  I developed a new respect for how tough our sweet girl is and felt so proud to be her mother.  A few weeks later, Hannah was able to suck out of a straw for the first time, and she quickly began making new sounds. We knew the surgery had been worth it. When I look into her mouth now, there is no evidence of the giant canyon that was once there. Today, a year later, Hannah tells elaborate stories and acts out dramatic events. Because her language developed so quickly – and she makes all the sounds she is supposed to be making for a 2-year-old – we have not had to start any speech therapy yet!

Minor Details

Hannah will have at least two more surgeries spaced out over the next three to seven years. She will need dental work to correct how the cleft affected her teeth.

She will still probably have speech therapy to decrease nasality in her speech. And she may face criticism from other kids. None of those things seem quite so “big” or worrisome now that she is here with us. She is funny, smart, beautiful, bossy, and most importantly, ours.  We love that when God knit her together, He knew that the very “disability” that others would see would be what brought her together with her forever family. It is not always easy to check “yes” to a possible medical condition or disability, such as cleft lip and palate, on a checklist.  In those early stages of the adoption process, it is easy to only focus on the surgeries or possible challenges. Once you live life with your child, you realize that those things are just the minor details.  Recently, we filled out that checklist again for our second child and it seemed different somehow. We were able to check yes to more things. We still took the conditions seriously, but this time, we were able to think more about the child and not just the challenges. On August 29^th, almost exactly two years from when Holt’s waiting child program manager called to tell us about our daughter, she called to tell us we had a son! Wu-jun should be home some time in 2013.

Liz Barnette | Adoptive Mom