Our Experience

I didn't realize what an impact the "Speech Therapy" video of Kai would make. That day, I had more hits on this website than I've had on Formed By Love or Anna Grace Comes Home TOGETHER, on any given day. The next morning, I awoke to almost 30 emails from parents who are waiting to bring home their cleft affected baby, and praise God, to some from parents who were on the fence about adopting a waiting child and had questions about this particular special need.

I've decided to go ahead and post on here the questions I was asked, although I think I answered everyone privately already (please let me know if I didn't!). My reason for posting here? Well, as I mentioned to someone a couple of days ago when they asked me if I didn't mind my life being "public", the answer was easy....."No". Trust me, it took a bit to get to that answer, but I know it is the right one, for me.

My reason? Because first of all, all that I have and all that I do is because of the Lord. I have been blessed over and over. I have witnessed miracles from my son's entire surgery being donated (see post July 22, 2006), to a domestic adoption falling in our lap for 1/3 of what the normal costs are and God blessing us with the beautiful most baby boy! All that, without us even being on a list or looking into domestic adoptions.

God's fingerprints are everywhere.....therefore, He orchestrates, we follow. And when we do, the plan is ALWAYS PERFECT! If I decided to password protect my blog, two things would happen. First, most readers would be my friends & family, who are Christian already anyways, and most importantly, God would not get the glory. I can't even tell you how many times I've received emails that one of my posts (through God using me) touched someone's life. Funny, what helped me decide to not password protect was a cute children's song "This Little Light Of Mine". It reminded me that we are not to 'hide our light under a bushel'.....so public we are!

Another reason for posting here, and one of utmost importance to me, is the fact that if through our experiences we can help one more waiting child find a home, if one more heart is touched to donate to wonderful organizations like Half The Sky or Love Without Boundaries, or if someone sponsors a child that may never have a home....then I have been God's hands and feet on earth, the reason we were called here.

I've digressed. Getting back to the questions about cleft. Here goes:

1. What is a cleft lip/palate? It is the most common facial birth defect and occurs during the 4th week inutero. One in every 700 births. The exact cause is not known, but it is felt that it is caused by both environmental and genetic factors, although there is not a gene that could be singled out to detect a cleft. Some doctors believe smoking and second hand smoking can cause this birth defect, along with the mother not having enough folic acid prior to pregnancy.

2. What type of cleft did Kai have? Kai by US standards was diagnosed with a "complete unilateral cleft of the right side". China diagnosis these clefts by degrees....such as 1st, 2nd and 3rd degree cleft lip & palate. Kai's report did not have any of those. His medical read "Severe cleft palate" because it was beyond what they considered to be 3rd degree. I need to add here that in his goodness, God did not make us aware of this when we first saw him. His picture showed a common cleft lip. Being human, we might have passed over him while going over the list if we knew the severity of it. But again, God's wisdom is great. He NEVER gives us more than we can bear and we honestly believe Kai's cleft is truly a very manageable special need, if you even want to call it that.

3. Did Kai drink from a "cleft bottle" at the orphanage and did you take one to China? Kai came from a very loving, buy very poor orphanage. Last year they had only about 10 adoptions, Kai was the 2nd of those 10, in April. They could not afford cleft bottles, nor do I think they are educated enough about cleft to even know about them. This is where organizations such as HTS or LWB comes in. So, the answer is no. They used a typical bottle with a VERY LARGE hole in the nipple. Since he had an open palate, air escaped out his nose and he could not suck, the large opening in the nipple allows the formula to just be guzzled down. As all children do, they adapt. As he got older, the formula was thickened with a lot of cereal and he learned to "bite" the nipple in order to get it to produce milk. When we went to China, we took a regular Playtex bottle and placed a large "X" cut in the nipple. He woofed down his first bottle without a blink!

4. What food did he eat? I admit, I was very scared at first. I kept thinking he would choke, gag and/or have lots of leakage from his nostril where the cleft was. What happened? None of the above? We had very little leakage from his nostril. Chocolate was the biggest culprit, and should a 22 mo. old have lots of chocolate anyways ::wink::? Some milk and some yogurt, otherwise, it was a non-issue and he ate EVERYTHING that crossed his lips!

5. When you brought him home how old was he and what was his biggest problem? Kai was 22 months when he was put in our arms. Without a doubt, ear infections were the biggie! He was immediately put on antibiotics for an ear infection in his right ear. Three weeks later, his left ear, three weeks after that, both ears. Finally, when we had his palate closed, they inserted Pressure Equalization tubes (or PE tubes) to allow the fluid in his middle ear to drain. We have not had an ear infection since! Ear infections are very common in cleft affected children, and some cleft babies due suffer some permanent hearing loss from the frequency of untreated ear infections. Kai's hearing was not affected at all. (Thank you, Jesus!)

6. How old was Kai and the time of his surgery and how was his recovery? Kai's surgery was completed on September 25, 2006 and he was 28 months old. You can go to our Formed By Love updates and scroll down to October 2, 2006. I give a report of how his surgery went. Also, you can click on the following link to watch a video of the days following his surgery:

Kai's Surgery

7. Will he need further surgeries? Yes! There is a possibility that in a year he may need to lengthen his soft palate. This is called Velopharyngeal insufficiency. His cleft surgeon is watching him closely and we will determine if he needs further surgery later on. Also, when he is about 5 years old, they will do a bone graft and insert bone in the area of his gum where the cleft is. Since there is no bone there, it does not allow a tooth to grow. At that time, he will have a lip and nose revision (cosmetic surgery). Then after his permanent teeth are in, he will have a tooth implanted where the bone graft was inserted. Orthodontics are definitely part of a cleft child's future, but many times covered by insurance due to it being a congenital birth defect and/or medical necessity.

8. Does your insurance cover his treatments? YES!!!!!!!! Our cleft surgeon was not covered under our plan (we did have others to choose from) BUT God took care of that! :) Other than that....everything was covered. The State of Florida covers visits 1x a year to the cleft team and his speech is fully covered by Early Intervention.

9. When did you start speech therapy? Immediately. Prior to leaving to China I had set up an appt for the Early Intervention team to come out to our house and do a complete evaluation. I cannot emphasize enough how important this FREE service is, not only for special needs children, but for any child that has been post-institutionalized. Why not take advantage of something that is provided by our school systems? Early intervention is available in every state. So, please look into it! It has made a WORLD of difference. I can't stress enough that YOU are your child's biggest advocate. Sometimes it's a lot of red tape you have to cut through, but the scissors are available....don't take NO for an answer when your heart is telling you YES! We also met with a cleft team that consisted of a pediatrician, a pediatric cleft surgeon, a dentist, a speech pathologist and an ear, nose & throat specialist.

10. Did you struggle communicating since he could not speak at 2 years old? Since we immediately started speech, we were taught very basic baby sign language. He caught on IMMEDIATELY! That has been a lifesaver. We honestly have not had ANY communication issues at all, since he clearly tells us by signing (and trying to say the word) what he wants. This is something we will also be teaching Anna Grace, and she has no speech impediments. We highly recommend it. Kai presently has about a 15 word vocabulary. Our cleft surgeon and speech therapist both agree that a big part of the delay was also learning an entirely new language.

11. How is Kai now? Does he have any significant issues? The word AMAZING does not begin to describe Kai's progress. He is an adorable, smart, witty, charismatic, ball of energy. His only sign of having a cleft issue is his speech delay, which will be something we will be dealing with for a VERY long time. Yet, a very, very small price to pay for the huge blessings that we are showered upon with this child. The love he gives us could never be repayed.

I hope these questions and answers help others that may be considering a cleft baby or that are awaiting travel. There is ALWAYS the fear of the unknown. Let God go before you and those fears will be washed away. You will make a difference in the life of a child, and the joy that this child will bring to your life will be immeasurable.

Below are some wonderful resources that you can visit which answer many questions,

WIDESMILES

CLEFT ADVOCATE

CLEFT PALATE FOUNDATION

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.

2 Corinthians 1:3-4

Disclaimer: PLEASE REMEMBER THAT THIS IS OUR OWN PERSONAL EXPERIENCE! I am not a physican nor an expert in any degree on cleft lip and/or palate. I am a Mom to 6 beautiful children, and blessed with a very special little guy who God created with this particular circumstance. So, please check with a professional before taking any steps. God bless you!