Saturday, February 6, 2010

Our special girl

Right now people who are receiving non-special needs referrals of children from China have been waiting for 4 years to receive a referral of a child, and the wait is expected to continue increasing. Thus many people are switching to the special needs program (it has always been our intent to adopt special needs children, with my medical background we just never thought otherwise). Even in the special needs program, because so many people want little girls some people are waiting many long months to receive a referral. Knowing all this, it just amazes me that our little girl was featured on both our agency photolisting and Rainbow Kids (a very popular photolisting of kids from many different agencies) for so long without finding a family. She was on there around 7 months before we submitted our request to adopt her. I had prayed for her all that time before finally realizing why God wouldn't let her off my mind - she was my daughter!

Yes, Micaelyn is a "special needs" child, which in our mind just means she is that much more special. However, since her special needs will require some medical attention it's probably best if we explain them now to minimize the questions later.

Micaelyn was found on March 5, 2007. Her real birth date isn't known, but based on her size they assumed she was a month old and assigned her a birth date of February 5, 2007. Most likely, she was closer to 2 weeks old rather than 4 weeks old and was actually born around the third week of February. I'll explain the significance of that when the third week of February actually gets her. However, there are several reasons we believe she was probably born later in February, the most significant one being her size and how her other medical diagnoses indicate a particular syndrome, Beckwith-Wiedemann Syndrome (BWS), a genetic disorder associated with a defect in chromosome #11. BWS kids are often born quite large. Thus, it's most likely that Micaelyn's size at the time of her finding was not due to her being a month old but rather due to her being a BWS baby.

Micaelyn was born with her abdominal contents outside of her body. All we know about it is that when she was found she had a surgical scar in her lower abdomen. Though this birth defect would have killed her if not properly treated, after being successfully repaired there is little chance of this specific birth defect affecting her future. Abdominal wall defects are one of the major indicators of BWS.

Micaelyn was also born with an enlarged tongue, another major indicator of BWS. It did not fit well in her mouth and was said to be cyanotic (blue). Had she been here in America as an infant she would have had tongue reduction surgery before she was 12 months old. Unfortunately, she wasn't able to get this surgery done as an infant. BWS patients sometimes appear to "grow into" their tongues, but often their tongue is still larger than it should be, a situation that can lead to problems with the teeth and jaw development as well as speech problems. It can also lead to extra teasing from other kids which quite naturally causes self-esteem issues.

In the earliest pictures we have of Micaelyn (around 12 months old), her tongue is very noticeably enlarged as it was sticking out of her mouth. It appears to fit inside her mouth now, but it still seems too big. In the 6 pictures we recently received, her mouth is hanging open in 3 of them. I have to wonder if they told her to shut her mouth for the other 3 pictures, much as we tell kids to smile for their picture. In one of the pictures where her mouth is closed, there is still a crack between her lips. It looks like even though her tongue fits inside her mouth now, it doesn't fit well. Thus, Micaelyn will most likely need tongue reduction surgery after we bring her home. This is not an easy surgery, especially at her age, and we will have to travel several states away for it. It pains me to think about putting Micaelyn through such a difficult surgery so far away from home when she is still learning to trust and bond with us, but I am sure God will carry us through it all.

Another characteristic of BWS patients is that they tend to be pretty big for their age. Micaelyn's height and weight have been very high on the American growth charts, which is really unusual for a child living in southern China. In fact, if the measurements we have are correct (and they may not be), she will be noticeably bigger than Malachi who is 1 year and 5 months older than she is (Malachi is also 1 year and 5 months younger than Caleb). Thus Caleb, Malachi, and Micaelyn will look like stair steps when they are lined up together, but their sizes will be in a different order from their age! Micaelyn's head circumference has also been noticeably smaller in comparison to her height and weight, another characteristic of BWS kids.

Another symptom sometimes seen with BWS kids is hypoglycemia (low blood sugar) in the newborn period. We have no way of knowing if this was a problem with Micaelyn, but we pray it was not because untreated hypoglycemia can lead to intellectual deficiencies (and is probably the reason that lower IQ is sometimes mentioned as a concern with BWS patients).

The most concerning part of BWS is the high risk for childhood cancer. BWS patients are supposed to receive abdominal ultrasounds every 12 weeks during their childhood years to screen for abdominal tumors. They should also have blood work done every 6 weeks during their infancy/toddler/preschool years to screen for tumors of the liver. Unfortunately, Micaelyn has not been receiving this screening in China. They did finally do some blood work and an ultrasound in December at our request, and while the results were good I was extremely disappointed the ultrasound did not address the kidney, the most likely spot for tumors. It pains me to know my daughter is at such high risk for tumors (very fast-growing tumors), and I am not able to get the screening for her she needs. Once again, all I can do is trust in the One who holds my precious child in the palm of His hands to keep her safe and healthy.

Although the risk of tumors should decrease as Micaelyn gets older, she will always be at a higher risk for other kidney problems. Unfortunately, her orphanage was one of the ones that used the formula that had been tainted with melamine. Even though she is in foster care, the orphanage that handles the foster care probably supplied the formula to the family. This tainted formula is known to cause kidney problems, so for a child who is already prone to kidney problems this is extra concerning. Even if she does not have kidney stones, there is no way to rule out the possibility the tainted formula added undue stress to her kidneys that will contribute to the development of problems later on since she was already at risk for these problems due to her BWS.

We don't worry about all the unknowns, the possibilities, or the risks with Micaelyn. We just love her with all our heart and thank God for the blessing of her in our loves. We don't consider her to be a "special needs" child, we just consider her to be extra special!

Here are the remaining pictures we received of her this past week. Click on the top one to see it larger and you will notice a dragon-fly on her sleeve. Based on her expression and the position of her arm I don't think she was too excited about it. In the next picture it is further up on her arm near her neck, and her head is tilted away from it. I can't help but wonder if the photographer didn't notice what had her so perturbed!


The Kings said...

I am praying for your little one.
He is faithful!!

Mom 4 Kids said...

Your story with your little girl is really a special one, congratulations! She really looks to be a little dear!

Dogwood said...

Congrats on your soon-to-be DD! As I was reading your blog about her and when I saw her face, I thought she looked a lot like my DD with her beautiful large eyes! And what a nice surprise as our DD's are both from Southern China, my DD from Guangxi, China (she turned 3 years in mid Jan). Near where your DD is from. Beautiful part of China and your trip will just be amazing! When do you actually leave? And by the way, your other children are adorable! You are indeed blessed with an incredible family, and what great news about your soon-to-be son! Woohoo! God sure wants you and your husband to raise an incredible family of different cultures and needs! Would love to adopt another child from China, and indeed we are only eligible now for an older child or a SN child as we are soon aging out. Will read more of your blog later on. Sincerely, Zoe

Dogwood said...

Oh, forgot to mention this. As a Speech-Language Pathologist, I would caution you to do any type of tongue surgery. In most instances, it is not the tongue that is enlarged so much as the facial area including the jaws that are in disproportion to the tongue size. IMO she is able to close her mouth without tongue protrusion from the looks of the photos. And her facial structures look fine also. Open mouth posture (tongue protruding) is usually indicative of enlarged adenoids and tonsils. Or for some children, they may have unawareness of their mouth being open and/or may have oral motor difficulties (e.g. dysarthria, apraxia). One usually sees drooling and eating difficulties with oral motor difficulties. And yes, we too were concerned about the melamine tainted formula back in the Fall 08 when we adopted our DD! From what is known, kidney stones are the side effects (or the worst of course is death!), and kidney stones can be treated. But like you have indicated, your DD has not needed this additional burden. My sister's son was diagnosed with Mozaicism, a rare genetic disorder affecting joints. But he is very bright and alert and a very social well-rounded teenager today in spite of some joint problems. Something tells me that your DD is going to do just fine with you and your family!