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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  • girlrobot - I’m sure someone has already told you about this documentary but it made me think of you!

    http://www.doobybrain.com/2012/08/20/somewhere-between-a-documentary-about-4-girls-adopted-from-china-and-living-in-the-us/

  • Flor - it’s just meant to be.
    and because He has willed it He will give you the
    resources necessary to help her heal.
    you know it in your heart just as i know it reading these
    words.. you were meant for each othe. and so a wonderful
    love story between you and your child begins.
    one that begins with getting to know each other and then
    it will continue in love.
    so so very happy for you!

  • Sadee - What a beautiful story, Ashley. I love how God has been preparing your heart for such a long time and the wisdom He has given you and your family to do what’s best for Little One right from the start. You know, on Monday when we all get to see her face and you holding her in your arms for the very first time, there will be people all over the world sobbing with joy for your family!!! I’m already choked up just thinking about it. Praying favor, peace and safety for you in your travels! Can’t wait til Monday!!!!

  • Anon - My best friends sister was born with a Left Cleft.
    She had surgery when she was younger.
    She’s not had any major problems since then,
    She is now a Primary teacher.
    When she was younger kids asked about her scar. but now no one notices it.

    Safe travels, this is such an amazing experience for your whole family.

  • Maureen - Our 3rd child, Samuel was born with a cleft lip and palate. It was a miracle he was born at all since the dr’s told us he had trisomy 18 & wouldn’t live to birth. But God had a plan and purpose for him and we trusted Him that our son would live and be healthy. He was born with cl&p, but miraculously no trisomy!! It was such a journey for us…we felt like newbie parents all over again…going through situations we had never experienced with the other 2. But he was an amazing joy and he was gorgeous, “broken mouth” (as our 1 & 3 year old would say) and all!!! He had the biggest smile we had ever seen! Honestly we mourned in a way to see that face change as he went in for his 1st surgery…that sounds crazy to people who’ve never experienced having a child with cl&p. But that was the face we knew for nearly 4 months. God was with us in amazing ways through the journey of endless dr’s, surgeries and care. We grew closer to Him in ways I know we wouldn’t have had we not been through the journey. Samuel, now 6, has been a joy to us and has not had any real troubles. We don’t see him or treat him as being different. He is truly fearfully and wonderfully made! Praying for you and your precious one…God be with you. :)

  • Sara W - Thank you so much for sharing your journey with us. I love hearing how the Lord has worked in your lives. Blessings to you as you meet your daughter and bring her to her forever home.

  • Kate @ Songs Kate Sang - When I was a teenager, I was “the babysitter”. It’s what I did and it’s what I loved. (just writing that brings back forgotten memories!). One of my most special ‘babies’ was our dentists newborn – with a cleft palate. Whenever I came over, they had usually just fed him so I didn’t have to worry – but I remember so clearly the time I did have to feed him.

    They had gone down to highland park to watch a parade. It was his grandmothers house. It was so very hot, so they decided to leave me there with the baby and take the other children. I was going to have to feed him.

    I sat on a big white bed with flowy white curtains and the window open. I was only 15, held him in my arms and he drank from the special bottle. I was so careful to hold the bottle correctly.

    He finished. I breathed. And he smiled at me.

    I let them know I would be glad to feed him anytime.

    Ashley, I love you to pieces!

  • Charissa Taylor - Reading about your family’s journey brings tears to my eyes. I am so excited for all of you. I can’t wait to see all of you together!!!

  • nicole i - The Lord bless you and keep you…His face shines on you and gives you peace.

  • giozi - Just read this. You are a remarkable woman. You two are so full of love. You are a lovely family.
    I remember in college there was a guy who had the cleft lip scar, he didn’t speak perfectly well but he spoke good. He was the friendliest guy in the class and now has a beautiful family.

    I do not know if you know that since May Lua goes to a speech therapist, she has no physical problem, but well, she does not speak well. She has improved a lot despite her young age she strives pretty.

    When she started kindergarten she did not speak. This second year she improved a lot, but of course not enough, I still would not take her treatment because she believed would improve single. I took her to a speech therapist to root a classmate asked me why my daughter did not speak well. I did not think the other kids realize and that made him to take.

    Like I said, it has improved a lot and is very happy.
    From here I send much love to you, your little one and is always surrounded by loving people.

  • Kirstin - I don’t normally comment on blogs, but I have been reading yours for a couple years now and I just had to write and tell you how happy I am for you and your family. I don’t even know you, but I sincerely wish you the best of luck with your new sweet girl. I wish you safe travels as well. I will be thinking of you.

  • Christina Larsen - Ashley and Chris, I don’t always get to read your blog as often as I would like, I love when you post to FB, so then I can sometimes read through. I know that you are full of different emotions as you get ready to board that plane and I wanted to say that I understand all of those jumble of emotions. I also wanted to encourage you in the fact that our Olivia had surgery after we brought her home and has speech and language delays, as well. She was born deaf, you may already know that, but we elected to do a cochlear implant surgery when we brought her home. We waited about 3.5 months, and although we probably could have waited longer, God used that time to bring us closer so she could understand and feel what a mothers care is when she isn’t feeling too good. Good luck with your flights, and when you get to hold her in her arms. I’ll be thinking of you all. We left on a Thurs and met our daughter on a Mon, as well. So many memories floating back. Sorry to write a novel. :)

  • sarah - Ashley,
    There aren’t a lot of moments in life when you can feel something so strong from just the written print. I have read your blog for a few years, I love your style, your pictures, etc. When I read this post, I “saw” your heart. I saw the perfect heart of a mother who truly knows what unconditional love is. It isn’t even about your little one’s issue, it is about the way you are going to bring her into your family first, make her little soul a part of something so beautiful and putting what others think about “physical beauty” out of the picture. You realize that she only knows what she has experienced and she doesn’t know about the cruel world quite yet. You are doing God’s work, you are thinking with the absolute best for your child in mind. I admire you, you are strong and faithful.
    Sarah

  • Cate - I’m so excited for you! I don’t think it’s mean of you to not share a photo of her at all. How special that the first photo will be with you. :) Hugs and safe travels to you all!

  • Elizabeth - wow……how wonderful!!!!!! love love love..that’s all I can say!!

  • ari - I’ve been reading your blog for about a couple of years now and I am so “anxious” and happy for you for these exciting and enriching adventure you have undertaken….
    She is truly lucky to have such wonderful parents and siblings (and family and friends :) )
    I really admire you!!

  • chrissy - Every time, every day I read your words I am left breathless….thank you for sharing your journey with us. I can’t even tell you how your strength, endurance, patience and courage have inspired and lent hope to my own journey. You are amazing and He is moving through you so beautifully<3 XXOO Chrissy

  • elizabeth - Ashley ~ you are a beautiful, strong mama! How awesome that the Father has been painting this masterpiece over the past 14 yrs!
    WOW! I’m sure you feel like you’re about to explode w. JOY!
    Can’t wait to see a picture of your BEAUTIFUL little One.

    btw…the Father led me to a mom of a beautiful little guy w. a cleft palate when i first began sewing ~ i was blessed to have a dear friend photograph him “modeling” my blankets.
    http://www.twogreenolivetrees.blogspot.com/2009/10/blankets.html

    {just wanted to share the beauty!}

  • Victoria / Justice Pirate - I know a little girl who was born with a few health and physical problems and one of them was a cleft lip and she had a successful surgery done. I was 18 when she was born and I remember the way her lip looked before and after, and now I don’t really notice the scars or that she had one. I haven’t really even paid attention at all, because I’ve seen her so often since she was 10. She talks pretty good. I never knew what caused cleft lips. It is interesting to find out, so thanks for the description.

  • Suzie Nichols - Wonderful wonderful post. Thank you for being so open and explaining that cleft lip and palate is not to be afraid of. My son is 8 with a blcp and I have other mothers who have adopted from China cleft babies in my rural town here in Oklahoma. We are here to help you with any questions and support. Please feel free to email me as well. Also you can connect to us on Cleft Lip and Palate Support Group of Oklahoma on Facebook. I excitedly await more updates!!

  • my family still spoils me » ashleyannphotography.com - [...] For those with questions about her cleft lip & palate, you can click here for a previous post I wrote about it. [...]

  • Laura@Ms Smartie Pants - Beautiful story! I think you are wise beyond your years and giving her time to trust and get to know you all is perfect. My mom was born with cleft lip and pallet and endured those surgeries, back then she would be left at the hospital for days without seeing her mom. Grateful things have changed, and that she will be home when the surgeries take place. Thanks for sharing your heart!

  • Patrice - I have been searching feverishly for a way to contact you! I have a friend who just discovered her unborn child has a severe cleft palate, which is only part of the problems her sweet baby is facing. I have no idea where to begin to support her. I don’t know of any great resources of information for how this works. Your newest daughter is so beautiful, and I see the hope and joy in your posts. My friend is so overwhelmed and I want to be able to offer her support in a way that will be meaningful, so that she might have hope return before her sweet child is born! If you can, could you email me any information you have that might be helpful, or direct me to a useful resource? Thank you!

  • carmelle - bless you :) Just wanted to let you know my daughter was born cleft lip and palate and if you have any questions I’d be happy to try and answer them. She is now three so we have been through three surgeries with her and I would be happy to share her before and after pictures. We love her so much and are SOOOO happy that God chose our family for her :)

  • Mandy - Beautiful! Just came across your blog today. Thank you for sharing your journey of adoption. Your story, walk, and trust in God resonates with me.

  • Stacy M. - “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.”
    I just love how beautifully you put this. My daughter was born with a cleft lip in 2010 and it has been a very interesting journey from the feedings to the taping to the surgeries. Now that she is 2 and her cleft is gone in the eye of an outsider, I still feel it is important for her and those around her to understand where she has come from and what she has been through because it has helped to shape who she is. I commend you greatly for taking in a child with a cleft, since I completely understand the struggles that comes with. But as I also know, nothing in life is sweeter than the big smile of a child with a cleft!

  • Amanpreet Kaur - Hello Ashley,

    You don’t know me! I am from India, just few minutes back, before i randomly opened your blog, i had put one question on Google ‘what is the reason behind cleft lip’ i was not looking for a medical answer (as i know that answer really well by now), i was looking it in a context of a past life, or you can say from the spiritual point of view.
    After reading your blog, you brought tears in my eyes. I have always seen my parents, playing strong and stood like a wall whoever said anything wrong to their kids. N especially with me, they never made me feel low or sad. In their eyes’I am not less than any beautiful actress’or probably the most beautiful girl in the world. But despite of that i always raised this question to the god. Why it was me? Why he chose me, for this problem? By now you must have understood, that i was also born with cleft lip.

    Just few minutes back, i was feeling low that why i was born like this. But then reading your blog happened. Trust me, Ashley, you brought back all those moments of my life, when i thanked god, for saving me and giving me this life, which is indeed worth living. People around me, they love me, for my parents i am there beautiful daughter. Earlier i used to think a lot about my looks, but i gradually, started accepting myself, i groomed myself. Then, magic happened, people could hardly recognize my cleft lip. Sometimes,i feel low and sad, so i just smile back to the mirror, or god does something or the other to make me feel beautiful or special.

    Your daughter is so lucky to have you both as her parents. She will indeed become a beautiful women, with a different identity and will make you proud. Lots of love and my blessings to your daughter. :)

  • Amanpreet Kaur - God, again made me feel special, up and moving. Thanks to your blog. :)

  • heidi - Thank you for this resourceful post! My husband and I are gathering our Dossier for our upcoming Chinese adoption and are hoping to adopt a little one with cleft lip and palate so your info was a terrific resource to me as I consider what will be the future for us. My brother was born with bilateral cleft lip and palate and other than the few times when he had to have surgery, he has lived a “typical” experience and is one of my heroes. (he’s 32, married with a little boy of his own now) Congratulations!!

  • Budding Taste: The Nose Knows | Inspired healthy organized - […] Smile. For a great explanation from a mother of a daughter who had a cleft lip and palate, go here (more medical description) and here (personal experience of […]

  • Teresa Fowler - Dear Ashley,
    Your blog has been such a great resource for me, thank you! I am also a photographer and we are almost to the end of our adoption process. We are just awaiting the final approval from immigration and then we can get our travel orders. Our daughter is 19 months old.
    I am writing because I have scoured the internet looking for information on feeding cleft lip/palate toddlers and have not found good, solid advice. I understand the bottles, and do intend to take some, but the orphanage says that she does not do well with bottles and therefore only eats rice milk from a spoon. Her lip has been closed but not the palate.
    I am wondering what you would do, or take to China, in this case? Would you take bottles with formula? What about the puffs or cheerios? I really am looking for any advice you can give.
    I was born with a cleft lip, so I feel that I am prepared for the medical side of this, I just want to be as prepared as we can be for the trip. Then we will go from there.
    Again, thank you. I know your little ones keep you busy :)
    Sincerely,
    Teresa Fowler

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