This morning, a friend at church was asking me about Esther Marie and about her cleft lip and palate. I guess since we have one child already who was born with that birth defect (Joshua), I have read more than my fair share of information about it. And yet, I can still learn more. When you have knowledge about a subject, sometimes you just take it for granted that everyone else knows about it and understands.
Esther Marie was born with both cleft lip and cleft palate. (If you click on her photo, you can see the tiny scars between her lips and her nose.) Her cleft lip is bilateral, meaning on both sides of her mouth. She had surgery already to repair her lip area and the repair looks very good to us. She still has a totally open palate, meaning the roof of her mouth is open from her uvula to her front gum line. This makes it difficult for her to eat and is more than likely the reason for her low weight and slight anemia. It also affects her speech.
Here is some information from a website that might help you understand this birth defect better:
Oral-facial clefts are birth defects in which the tissues of the mouth or lip don't form properly during fetal development. In the United States, clefts occur in 1 in 700 to 1,000 births, making it the one of the most common major birth defects. Clefts occur more often in children of Asian, Latino, or Native American descent.The good news is that both cleft lip and cleft palate are treatable birth defects. Most kids who are born with these conditions can have reconstructive surgery within the first 12 to 18 months of life to correct the defect and significantly improve facial appearance.
If you would like to read more about this condition, please click on the title of this blog. I tried to find a website that was not overly technical. If you are curious about images, then search for those. I am not going to post any here. We do not have a photo of Esther Marie before her cleft lip repair.
Esther Marie will be 26 months old when we get her (turned 2 on April 7th) and she will need corrective surgery to close her palate as soon as we can schedule it....hopefully in August or September. We want to give her some time to bond with us before she has to endure the surgery and recovery. She might have to get tubes in her ears, but we are not sure yet. She will then need intensive speech therapy after the surgery. Because Jasper is self-employed, our insurance does not cover this first surgery for a pre-existing condition. We are trusting God to provide the funds for this surgery and her speech therapy! Esther Marie is already months past the point where she should have had her palate repaired. Each month we wait, it severely affects her physical development and her speech development. (The initial surgery is intended to create a functional palate, reduce the chances that fluid will develop in the middle ears, and help the child's teeth and facial bones develop properly. In addition, this functional palate will help your child's speech development and feeding abilities.) We cannot wait a year until she is over three years old! It seems like I am always asking you to pray, but again....would you please pray for little Esther Marie, for God's miraculous healing of her open palate...or for God to give us direction about when she should have the surgery. Also, pray for our finances.
We have a very good cleft lip and palate team here in town at one of the hospitals. We are blessed to have them so close. We also have an international adoption clinic that specializes in foreign adoption issues. We rely on the specialists at this clinic to help us with medical issues, bonding issues, and social and emotional development. Being born with cleft lip and palate is not just about fixing the cleft openings, there are many other issues to deal with during afterwards.....eating issues, speech difficulties, speech therapy, ear infections, dentists and orthodontics issues, bone grafts, jaw issues, and last but not least, emotional and social issues.
We know God means for Esther Marie to be part of our family!! And we know God will help us deal with each and every issue she has to face. I have dreamed dreams and had visions about her for over two years now, and I am overwhelmed with emotion because is just about a week I will be holding her in my arms....June 10th...Gotcha Day!
Esther Marie, mommy and daddy can't wait to meet you, hold you, kiss your sweet face and tell you God loves you and we love you too!
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