You Asked...Cleft Related Questions

Hey There, Thursday!

Today, I'm answering all the questions sent my way regarding anything cleft-related.  I want to begin the post by saying that I'm in no way a cleft expert.  I also know that if Britt had been born in America her cleft journey timeline would look a lot different, but I'm happy to share what I've learned in our two years so far.  Hopefully, it will help someone else and if you're a cleft mama, please add your thoughts as well!


*What is a cleft lip/palate?
"Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don't close completely."  Source  

I really couldn't have said that better myself.  A cleft lip can be on one side only {unilateral} or both sides {bilateral} and like most things the severity can range.

Britt's orphanage had a relationship with our adoption agency prior to us adopting her so we actually have pictures of baby Britty pre-surgery that our agency took when she was six months old.  {I'm so thankful for these!}  Britt's cleft lip was bilateral and pretty severe.

*What causes a cleft lip/palate?
The causes are unknown.  It's believed that most often genetics typically are the reason for cleft lip and palate, but not always.

In utero when the baby's face is being formed some tissue just doesn't fuse together properly.  It can happen in both the lip and mouth areas.

*Was the work done in China helpful or harmful?
When Britt was around eight months old, she had a lip repair surgery in China.  The work was super helpful in that it made it much easier for her to drink a bottle {even though her palate was still open}.  I, along with her doctors here, think they did a fabulous job on her lip repair.  On one side her scar is barely noticeable.  Super thankful for those doctors that did such a great job!

*What kind of feeding difficulties did she have/still have?
This was definitely the toughest part of being in China...figuring out how to feed this sweet baby of mine.  We knew she used certain bottles where basically you squeezed the milk/formula out of the bottle instead of her having to suck it out herself.  Because with an open palate in your mouth, there's really no way to get suction.  I packed those special bottles but keep in mind she was seventeen months old so getting her to eat enough to be full with those teeny bottles was a challenge.  I eventually cut the end off the bottles and she much preferred that.  She got much more in a quicker amount of time.  We also fed her some table food as well while we were there.

Sidenote-I have no idea if what I was doing was the "right" thing to do but when in another country I was willing to do anything to get this baby to eat.

It was much easier once we arrived home.  Baby food was our friend during those first couple months.   She eventually ate anything and everything we were eating but due to the open palate it would come out her nose-just a bit.

In August 2017, after being home three and a half months her doctors here performed the cleft palate surgery.  The recovery was absolutely awful!  Not sugar coating it a bit because those two weeks after surgery were AWFUL, but three weeks after the surgery she was fully recovered.  Once they repaired her palate eating, drinking, straws, sippy cups, etc. all became so much easier.  It took some time to get used to using her mouth differently but now she's totally fine with basically any type of cup and she can eat whatever without food coming out her nose.

*Does Britt's cleft lip/palate ever cause her pain?
No, now everything is mostly repaired so there's no pain or struggles with eating.

*How long does it usually take to repair the palate?
I'm not sure what the norm is, but Britt's palate repair surgery was around four hours.  An ENT also added tubes which took some time as well.

*Her little nostril always looks red.  Is that related to her cleft lip and will it heal?
Yes, it's totally related to her lip repair.  When the doctors in China repaired her lip, basically just too much of her inside tissue is now on the outside of her little nose.  So, the part that always looks red isn't hurting her or bothering her in anyway...it's just inside tissue showing.  There's nothing to heal-even though it might appear like there is.

*Please share all things recovery related!
I've only experienced the cleft palate repair surgery and keep in mind-kiddos born in the US with a cleft palate usually have the repair surgery at nine to twelve months.  Ours was a little different.  The recovery was difficult for many reasons...
*Britt couldn't drink out of any type of bottle or sippy cup.  She could only use a regular cup, which was hard with a twenty month old.
*She was not allowed to put anything in her mouth for at least two weeks and she was a finger sucker.  Having to put those no-nos {those velcro things that kept her arms or fingers from reaching her mouth} on her arms was so sad!
*Britt was too little to really communicate with us well and she was still learning the English language.  It just seemed like a hard age-she was too old to be oblivious to what was happening but too young to understand.  If that makes any sense at all?

Those tiny little throw away Dixie cups became our best friend.  They were small and she could eventually drink out of those-no problem.  It just took us a while to figure out what was gonna work.

*Does Britt have regular appointments with a specialist?  Any surgeries on the horizon?
Yes, she sees her craniofacial team every six months and then of course, after surgeries we check in with them more frequently.  There will be quite a few more surgeries on the horizon.

*How many surgeries are needed in total and why?
This is a tricky question because while some cleft related surgeries are absolutely necessary-other craniofacial surgeries are cosmetic.  We'll kind of play the number by ear and just see how things are going.  There's not a set number of surgeries each child has.  She will have one in the next year or two to repair that red spot someone asked about above and to open up her nostril a little more on that one side.  I'm hoping that is a walk in the park compared to that palate surgery.  {I've heard it will be.}  There's one big surgery she'll need around 7 or 8 years old and for sure, lots of orthodontics work is in our future.  Those are the definites and we'll just see how it goes along the way.

*How do you explain it to Britt?
Britt is a little too young for us to explain everything to her at the moment.  Our entire family does make a concerted effort to constantly build her up.  {Not because we've discussed doing this but because everyone is smitten.}  My hope is she's overly self-confident thanks to her big siblings who are always saying the sweetest things.  But my prayer for her is she knows her value and worth are in her relationship with Jesus.  

Have you guys read the Veggie Tales book, God Made You Special?  My aunt gave it to me when I was pregnant with Ebby Lee and I remember reading it to baby Ebby Lee {and crying as I read-thank you hormones} but that book means something even more when I read it to Britty.  

Here are the lyrics...{It's a Veggie Tales song too}

God made the heavens, 
the land and the sea,
the fish in the ocean,
the birds and the bees.

He grew all the plants,
put fruit on the trees.
He made everything-
He even made me!

He picked out my smile, 
my eyes, and my nose.
He was very particular
from my head to my toes.

I'm just what he wanted
and I think it shoes
that He's really creative
and all of heaven knows...

He thought it all over.
He made me just right.
I make Him happy-
I am His delight.

When I look in the mirror, 
I see His touch...
'cause God made me special,
and He loves me very much.

Sometimes I feel down.
Sometimes I feel blue,
Don't like something about me-
it's sad but it's true.

But then I'm reminded that
God had a plan.
He wants me to be
just the way that I am.

He thought it all over.
He made me just right.
I make Him happy-
I am His delight.

When I look in the mirror,
I see His touch...
'cause God made me special, 
and He loves me very much.

Again, my prayer for her is she always remembers she was fearfully and wonderfully made.  And we think she's absolutely perfect.

Thank you for reading today!
XO

16 comments

Mix and Match Mama said...

I have no doubt that this post is going to help many today, friend. xo

Sheaffer {Pinterest Told Me To} said...

Beautiful post about a beautiful girl. Love you!

Beautifully Candid said...

She is just so precious!! My son, who's now 6 months was born with a bilateral cleft lip and palate and is also a sever case. It's been a long journey and we have tons of weekly doctors appointments, still waiting on a lip surgery date, but he is such a joy and has captured all of our hearts. Thanks for sharing more about her!! Sierra Beautifully Candid

R's Rue said...

Britt is beautiful. So is her mom.
www.rsrue.blogspot.com

Narci said...

I’m so glad you did this post. I learned so much about cleft palate! And I cried while I read the book too! We used to read that to our kids when they were little. So sweet!

Elspeth Mizner said...

SO informative and such a wonderful post. Thank you for being open about Britty and your family! I love that book! So incredibly sweet!
www.elspethsdaybyday.com

Stephanie said...

Thank you for posting this. We brought our daughter home from China last July. She is 2 and a half right now and just had her cleft surgery in November. The recovery was completely awful. Now we are working on speech, which has been super slow too! Britt is so sweet, you guys are doing a great job!!

Adrienne Flanders said...

I have a special place in my heart for cleft kiddos! My son was born with a bilateral cleft lip and palate. It is hard to see them go through surgeries and all the appointments, but God really does make them so tough and resilient! ❤️

Kathy Cochran said...

What a beautiful post, thank you for sharing. Britt is just adorable, God has blessed your family!

Unknown said...

I don't have a cleft palate, but my tongue and my tonsils are about 25% larger than the average person's. My doctor said that anything palate related is due to vitamin B (which includes folic acid) malabsorbtion. I do have the MTHfR genetic factor, which does not allow me to absorb Vitamin B in its regular form. Instead, I take methylated Vitamin B. My sister's children both were born with cleft palate problems, so she (and her kids) will get tested for the MTHfR genetic factor.

Sarah said...

We are traveling in August to go get our son from Xi'an with bilateral cleft lip and palate. He is almost 2 and I can't wait to have him in my arms. Thank you for sharing this and advocating for adoption! Britt's journey gives me hope for our little guy❤

Pam Saltmarsh said...

She's beautiful. In your pics, I have always thought she looks like she has cute little rosebud lips. She is so lucky to have your sweet family!

Jen said...

Wow, great info! I had no idea about all the upcoming surgeries. Poor sweet little Britt and mommy. I know she'll do great.

Laurel said...

I found this post really helpful and informative! I had a vague idea what a cleft lip r palate was but have a much better understanding now. I’m sorry that recovery was so hard on her, but it sounds like everything is moving forward in a positive light!

Pam Zercher said...

We have 3 adopted Chinese kids-1 with cleft lip and palate, 1 with only a cleft lip. It *is* due to lack of folic acid in the birth mama’s diet OR could be genetic as well.
Yes, horrible terrible no good very bad surgeries but it’s worth it all to have these precious ones in our lives. Ours are 21 and 16 and so very much worth all the time and money spent on them! Speech therapy for years with the one with cleft palate. Again, it’s worth it! Jesus knew their worth before we got them. ����

Kendall said...

Thanks for sharing this! We have a son with a repaired cleft lip and palate too. It was a totally random occurrence and don't know why it happened but are so thankful for our perfect, strong and incredible littlw boy just like your Britt. It is so helpful to educate those who don't know what it is and a great lesson that we are all different and special and unique!