Saturday, November 7, 2009

Adopting a child with a cleft palate

We are part of a cleft palate support group here in Utah and recently wrote up this little explanation about our experiences as adoptive parents of a child with a cleft palate for use on the group's truly fantastic blog.

Parenting is not for the faint of heart. Adoptive parenting is for those with extra guts. And adoptive parenting of a child with a cleft palate? Well, that's left for those with an extra well-developed sense of adventure.

In January 2009 we traveled to Karaganda, Kazakhstan to meet and welcome 22-month-old Alexandra Grace Morningstar into our family.

Sasha (short for Alexandra) was born with a wide bilateral cleft palate and (maybe) with mild Pierre Robin Sequence (PRS) and spent most of her early childhood in hospitals and the Botakoz Baby House. When we first learned about Sasha's cleft palate, we were torn - we knew that this was an easily correctable condition here in the US, but we also knew that it compounded the scads of the unknowns that are intrinsic to adoption. So we started researching.

After talking to families in similar positions to our own, researching on the web, and talking with the cleft palate team at our local children's hospital, we learned the following:
  • These kids are survivors. Our daughter would not have lived through her challenging early childhood without a strong will to survive (and believe us, she is strong willed!). Orphans with clefts have learned to successfully navigate their environments without a lot of special treatment from the world around them.
  • Cleft kiddos have learned to make feeding work for them despite physical challenges. You are not going to break them and they're not going to starve when you get home just because you don't know the first thing about cleft palates. They have mastered their own feeding techniques, which often include shaking their heads to move food around their mouths, because they can't use their palates for leverage
  • Don't be too worried about early childhood delays. Because of a far harder-than-average start in life, it is normal for cleft orphans to be very small and significantly speech delayed. "Normal" delays from institutional care can be compounded by the cleft palate. Our daughter was a mere 14 pounds at 18 months of age and had only one discernible word when we met her ("kukla", which means doll in Russian). In the past months her vocabulary has simply exploded and her words become increasingly more discernible as she learns to use her "new" mouth and works with her speech therapist.
  • You probably just have to accept that you'll never know what caused the cleft. Maybe you'll get some family history that can help you understand what happened, maybe genetic counseling will help you diagnose the root cause, but most likely it will be a part of your child's biological and gestational history that you'll never really have the answers you want. Many biological parents of cleft kids walk this path as well.
If you know about your child's cleft before adoption, you have the opportunity to prepare in many ways:
  • Research your medical insurance and get your insurance ducks in a row before traveling
  • Choose a hospital and surgeon. After examining your child they will finalize the treatment path, but choosing a surgeon before travel will eliminate one more to do item when you return, exhausted and overwhelmed, from your adoption travels
  • Learn baby signs. Depending on your child's age, we definitely recommend learning and using sign language with your child. Sasha had physical impediments to speech, but she latched on to sign language within our first few weeks together and still often uses signs to communicate. Using sign language with Sasha was a godsend.
  • Talk with cleft adoptive parents. They will encourage you, remind you that you are up to this challenge, and share their own tips and tricks that were helpful in their first months home with their child. You can find other cleft adoptive parents through Yahoo and Google groups and your domestic and international agencies.
  • Be real with yourself and have extra grace for your spouse. Try to mentally adjust to the idea that you will probably have more than "average" (whatever that means) difficulty in your first few months home with your child. The fatigue and simple overwhelming nature of bringing a child into your home will be compounded by doctor's visits, surgery, speech therapy, and lots of chocolate running out of your child's nose before the cleft is repaired (this is adorable, by the way). It's hard. And it's worth it.
Welcoming Sasha into our family had been one of the most incredible and rewarding experiences of our lives. If you have the opportunity to adopt a cleft child, we definitely recommend that you evaluate and seriously consider your ability to care for this little one's medical, physical, emotional, and spiritual needs. And if this is the right path for your family, then go for it! Your child will teach you how to care for her, your doctors will guide you through surgery and therapy, and each member of your family will be richer and deeper for the experience.

If you'd like to read more about our cleft experience, here are some blog posts that can walk you through the journey:


tac said...

This is an amazing post. You guys are truly special people!

The Gobble's (Lanetta) said...

Great post... Great writing!
Sasha is a doll.. love that Pic of her.. :)

Lori @ Five of My Own said...

Great post. I am glad to see I seem to be doing the things you suggest to ready ourselves for Macy's arrival.

I have to admit I didn't realize Sasha had a cp. How did I miss that? Until she had her surgery I didn't know. All I saw was a gorgeous little girl and her fun loving family.

Thanks for reaching out, you and Sasha provide such wonderful encouragement.


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