Wednesday, February 3, 2010

Adopting Cleft

In December of 2006 Hubby and I felt called to adopt a waiting child. The same day that our decision was made we saw a little girl on our agencies waiting child list. She immediately stole our hearts. Being a nurse I was open to adopting a child with cleft lip and palate- I felt that it was fixable and that the child could have a fairly normal life. I was not sure how hubby felt, this was all new to him and we hadn't had a chance to talk about it. When he mentioned how cute that little girl was with the bilateral cleft I just about jumped outta my boots. YES YES, call the agency, call the agency! That day we had her referral and we new she was ours!

Today Anna had her yearly cleft appointment. We spent a good part of the day at Mpls. Children's Hospital where she is seen by specialist after specialist. At noon we have lunch and then return to the clinic to meet with all the Doctors. Over the lunch hour they confer and have a planned course of action for her medical care for the next year until we come back again on the first Wednesday in February 2011. It is amazing how organized and how thought through the whole process is!

There are more surgeries than we had originally thought and it is more complicated then I expected but it is so possible and the DR's are so capable.
Here is a list of the surgeries Anna will have- (every child is different)

Cleft Lip repair- done in China. The did an okay job, not perfect. The did not make it worse. They left extra tissue to work with in the future. Her cleft was double wide so they did the best they could to fix it.

Cleft Palate repair- done here after she was home 3 months. Tubes put in at the same time.

Emergency re-repair- 10 days later Anna found a sippy cup with the no drip seal still in the cup. She was so excited to be able to suck for FIRST time in her life she sucked so hard she tore the stitches inside her mouth. This never happens BUT it did happen to us.

Dental work needed to be done under anesthesia. She got 2 crowns and a good teeth cleaning. In Anna's village the babies drank tea and formula. She had tea stains on her teeth.

After meeting with the cleft team today. Anna will be having surgery this year. We are thinking around November (sorry to say it has to be after Johnny's soccer season). They will re-evaluate her speech in August and we will schedule her surgery.

This time Anna needs-
Her palate elongated because there is too much air coming out of her nose and it significantly effects her speech. They will do a lip revision and give her a center piece to her cute little nose. She may have tubes again and they will also repair her thumb - she has a trigger finger or is it a trigger thumb?

Her next surgery after this one will be when she is 7 yrs old. She needs to have a bone graft for her upper jaw. It is split in 2 places. Before this can be done she needs to be bigger and have larger bones.

She will needs her jaw widened and have braces on- most likely a couple times.

She may have another lip revision when she is about 12 or 13.

She will have her nose "done" for the last time when she is around 16-18 and maybe another lip revision at 18-21. I am excited to see the results (but I don't want the time to go by too fast)!

Before Anna came home I mourned her upper lip. I prayed for God to take care of her and heal her. I read all about cleft and felt like she would not have many of the issues that cleft kids tend to have... well she does... she has them all. I felt so bad for what she was missing. I began noticing everyones upper lip, especially children's upper lip. I mourned her smile that she may have had and wondered what smile she would have. It was good to mourn it because by the time we met her it didn't matter at all. She was our precious baby!

For awhile I thought I would not adopt a child with cleft again. I can't tell you why I felt this way- I don't know why? I don't feel that way now. I do not see Anna's lip as a disability, I do not notice it at all. It is just part of who she is and we just do the things we need to do to make it better. It is easy on our part, the cleft team makes it easy. We see her as adorable, delightful, and as cute as can be! She fills our everyday with joy and everything she does is just so stinkin adorable!

If you are thinking about adopting cleft- pray about it, it is so "doable"! As with any minor disability- educate yourself, find Physicians in your area that specialize in cleft repair and pray about it! We are so thankful for our little Anna!

(No, we are not in Florida! I am just using the pics from when we were!)


Sue said...

I am glad to hear that the appt went good. Anna has an adorable nose and smile. She is a stunning child as she is.
I agree with you there are a lot of disabilities that are doable, that you just have to broaden you horizons and look at everything that is out there. We are have awesome and are getting awesome children......

a Tonggu Momma said...

This is a great post - thank you! I'll be linking to it next Wednesday at NHBO.

Nancy said...

It's funny, I don't even see Anna's cleft issues when I'm with her and in the photos. I see so much more about her I guess - her eyes, her smile, her determined attitude, her personality. Beautiful regardless.

Sarah said...

You know, I never even noticed that Anna had a repaired cleft lip! Funny, because my son Jadon also had cl/cp, and Grace had just a cleft lip. You would have thought that I would have noticed! But nope! All I saw was an adorable little girl.


Adeye said...

Gosh, I never even noticed either! That's amazing. What a wonderful, informative post, my friend. I have several friends who have adopted cleft kiddos. It seems so manageable. I WISH more people would GO!

Karen said...

I learned a lot from your post. When we were referred our Abby, we were told she had a missing toe. It turned out to be all her toes missing on one foot due to an accident. They were amputated at the growth plate so now at 10 yrs. old her "little foot" as she calls it is about 6 inches long. We have an ortho surgeon we see at Children's Hospital in Little Rock. Also we visit Hangar Prosthetics where she is fitted with her shoe insert. We are looking forward to her reaching a stable shoe size shen Abby will be fitted with a "foot" almost like a slip on shoe. It will have real toes as she says that she can paint. She is so comfortable with her foot she even paints pretend toenails on it! She jokes that if she goes with her older sisters to get a pedicure they will charge her half price!! She is beginning to walk with a limp and the muscles in her calf are visibly smaller so the time is getting nearer to change the insert to a prosthetic. Your comment on doable special needs is so true! We went into our adoption very openminded stating we would accept any special need - the sisters were considered special need because they were to remain together. We ended up with a double blessing! Thank you for sharing your knowledge and experience.
Karen in Arkansas

Cari said...

Thank you, thank you, thank you for this post! Our family is leaving for China in 3 weeks to bring home our 2 year old daughter who has a bilateral cleft lip and palate unrepaired. This is our first time having a child with any special need, so your information on your post was so interesting to me. I've researched a ton, but at times feel like I don't know anything about it. I may have questions for you in the near future...if you don't mind. :)

Anonymous said...

I am so happy to have read this post! I had my third baby in October, and he was born with a wide bilateral cleft lip and palate. He just had his first surgery 2 weeks ago. You can see him at . His page is titled SweetDuncan.

Anyway, since starting this journey, I have read a lot about Chinese babies with clefts being abandoned, and my husband and I hope to adopt one of these beautiful babies in the future. Thanks so much for sharing your story!

The Heald Family said...

Thanks Jean for doing our research - ha ha!
I don't know about you, but as a family we are so used to her speech and work on her tough sounds, but sometimes I forget what is ahead. I know I need to take Lee Lee in for a check as she needs her nose lifted and I am going to ask about the palate and what you are saying might help her speech. We do know that she will most likely have one of her hips redone in a year, so I should consider the timing of all of this!
Anna looks adorable:) Her hair is so long - Lee Lee wants long hair so we are growing it out now. I can't believe she will be 4 in a month. When is Anna's b'day? I love the family picture!! Can't wait to meet them.

Pam said...

Your little Anna is simply beautiful and looks like she has such a sweet spirit, too.

I found your post so informative~ I had no idea what all was involved with SL/CP SN.

Shirlee McCoy said...

What a wonderfully informative post!

Gretchen said...

I loved your post!

We brought home our daughter in November with repaired CL/ unrepaired CP. Her surgery for her palate and tubes is scheduled for Feb 22. I am anxious/nervous about the other children have never needed such extensive surgery. I thank you for your timeline as well. I kind of had it down, but it was nice to see you had the same timeline as I do.

As everyone else has mentioned...I never noticed her lip either. People tell me that a lot about my Ashlyn too.

janardan said...

Thank you for this post! We ended up with a double blessing! Thank you for sharing your knowledge and experience.We provide cleft palate surgery in kolkata to avail this.

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