Tuesday, November 12, 2013

My Newborn Has a Cleft Palate

My mind plays back to that moment, not long after Eliyah was born, when the lactation consultant lifted her up, curious about the smacking sound she was making as she was trying to nurse, and held her up to the light of window. "Oh!" she said as Elly let out a cry and opened her mouth wide, "It looks like she has a cleft in the back of her mouth."

She said it so nonchalantly and went on talking while I lingered on those words. A cleft? To me, "cleft" brings images of a cleft lip, which my infant, born moments before, obviously didn't have. But still, a cleft lip is serious, this sounded serious, what did it mean? In the hours that followed as we wondered and didn't actually receive an expert opinion for days, Isaac and I did what parents should  probably never do and did research on wikipedia and WebMD.

Sometime in the early weeks of her development, growing plates in the skull were fusing together. The back of Elly's that forms the roof of her mouth, the palate, didn't fuse. Now we know that hers is known as a partial cleft, a bilateral incomplete cleft palate. It's in the back only, primarily in the soft palate and uvula.

It seems, in some ways, so simple to me. I have a brother with Downs Syndrome, and it is ingrained deeply in me that children are a gift, and God gives us the children He wants to give us. The role of the parents is to love and care for that child. That is, in most ways, fairly simple. Nothing changes. I have a beautiful child. I love her so much my heart could burst when I look at her, and just like with Judah, I weep during night feedings as I watch her tiny sleeping face and marvel that she is mine, my child. It is perhaps the greatest privilege of my life to raise Elly and Judah. In the hospital as I reeled from this news that Elly was born with a cleft palate, there was and is still this deep peace that she is still mine, I love her, the task of raising her has not changed.

But still, in those first days when she would cry and I would look into her mouth and see that hole at the back, a part of me would feel afraid. This baby girl that I love, what is this new scary thing that is a part of her that I don't know or understand? What does it mean for her life? What does it mean for ours? How do I care for her well?

The pragmatic answers are simple, and actually relieving. This is fairly common, the fourth most common of all birth abnormalities. Cleft palates are fairly easily repaired in the grand scheme of things. In the short-term, we feed her with special bottles because she can't create the suction needed to nurse from me. We just met with a surgeon and are told that at about three months of age they'll repair her soft palate and uvula. That means just a minimal delay to our plans to go overseas. They'll probably do a second surgery around two years of age. That might be it. She might need speech therapy. We don't know.

Last week there were super emotional days when my milk was coming in, hormones were flooding, and I was totally overwhelmed by trying to juggle a toddler and a newborn as well as grapple with this cleft palate thing. On the way to one doctors appointment after just barely getting out the door with two crying kids and both of us at our wit's end, I cried my way to the doctor's office. The only explanation I could give Isaac was, "It's just a lot." Most of the time, though, the "a lot" has more to do with figuring out how to parent two kids than how to deal with cleft palate. There are hard things though, what ifs and the scary prospect of surgery on an infant. It's okay to be afraid, it's okay to mourn.

It would be normal to wrestle with questions of sovereignty. Is this God's plan? Who caused this? Why? But really, I don't wrestle with that. I am at peace with the mystery. Regardless of the theological questions, I believe that cleft palate is a part of what God is doing in our lives and what He is doing now in Elly's life. It is for a purpose. It's a part of this messy, beautiful life that is is, ultimately, for His glory, sometimes in the pain and sometimes in the healing and usually in both.
As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. (John 9:1-3, ESV)
I do not ask or expect freedom from hard things like this. In the overwhelming moments over the last two weeks, the strength to handle it comes from the Spirit in me. It doesn't mean it's not crazy or overwhelming, it just means I have the strength for the next step. That is true in the mundane daily frustrations and in the big picture questions.
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair.  (2 Corinthians 4)
Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 
Now this is passing from new and overwhelming to status quo. Elly has a cleft palate. It'll be repaired. It's actually okay. Every kid has special needs at some point, emotional, physical, or spiritual. This is one of Elly's. Even though it is a hard thing, it's contrasted with the deep beauty and miracle of new life. She is breathtaking. There is a such a profound sense of awe and joy in relishing a newborn. Even as I write she stirs and lets out several soft infant sighs and funny grimaces. She smells of milk and that precious baby scent. This is glory, here. I worship.



Taste and see that the Lord is good....

Followup! Elly had a repair surgery at 3 months old, which I wrote about here. She is doing great.

2 comments:

william and brittany said...

What an amazing post, Kacie. Praying for your sweet girl.

Jaimie said...

Congratulations on the birth! I'm glad everything went 99.9% well. This seems to be such a small thing and it's great that everyone seems to know exactly what to do to take care of it, though I understand how as a parent it can be scary.

So, when I got your announcement email and saw she was named "Eliyah," which is a gorgeous name by the way, I had forgotten Judah's name. Or rather, I had confused Judah's name with another young'un I know from a missionary family (my cousin Peter's sister's son) who is named Elijah. So I thought you'd named your kids Elijah and Eliyah. And I was like, Are they insane?!?! Hahaha. Anyway, it was a relief to learn that I am the insane one who forgot Judah's name. :P