Friday, January 15, 2010

Diagnosis of Fetal Alcohol Spectrum Disorder

This is something I want to talk about, just to get the information out there, and also, just a record for myself, so later, I can look back and see where exactly we began. Zachariah has been diagnosed with Fetal Alcohol Spectrum Disorder. This can mean a lot of different things, for different people. There are so many factors that go into it as well. I will just tell you where we are. DHS has started a program with UAMS to study this disorder with Foster Children in Arkansas. Until now, it there really hasn't been any information about it in our state, and no doctors with any experience in it. The statistics have found that foster children have a greater risk of having this, just b/c of the environmental/behavioral issues of their mothers during their pregnancy. Many drink. Many use other substances as well, and heavily, as in the case of both our boys. Alcohol is different in how it affects the brain as it is developing. A child with FASD's brain will look much different from that of a normal brain.
As I am short on time today, I will just begin with our diagnosis. Zachariah came into care before they were testing for this, but his attorney ad litem referred him to the clinic for testing, b/c she said he had visible facial signs of it. I had never noticed this as a concern until she pointed it out. I had just thought he was going to have a large nose, or that this was just hereditary from his dad. They began by taking a photo of him, and measuring his facial features on the photo. There is a plot system, certain things they look at, and if they score a 3 our 5 or more, then they will go in and see the doctor for further examination. Zachariah scored a 2. But, they also did this photo when he as 11 months old, and they said it is really hard at that age to get an accurate photo, and just diagnosis in general b/c there isn't as many factors they can look at early on.
Here is a recent photo of him, not smiling, just so I can point it out. Notice the bridge across his nose, it is wide and flat. Also, he has skin flaps over the corner of his eyes. These are facial features. Also, above his lip is flat, it doesn't have the crease like most people's do. There are other facial features, but these are the ones he has. Even though Zach's score wasn't high enough for testing,the recommended it anyway b/c of his mom's history. The doctor plotted his growth, and was concerned b/c he was a normal size at birth, and then immediately dropped way down on the charts, below the 10th percentile, and that is where he has stayed. He has also had a very small head circumference. These are all diagnosing factors.
I included the one below of Chrisian, and then younger photos of Zachariah. I see things in Christian too, that concern me, and they said they will go ahead and test him early since his brother has a diagnosis. It will still be after he is a year old though probably. I am, though, preparing myself to use that as an argument that he needs younger parents to raise him. There is a big chance, of a long tough road ahead, they may even need parenting support as adults as well. Christian has the same eye folds, the bridge of his nose is very similar, and he has a small lower jaw, also a diagnosing factor. He is also growing slowly, and is small.


He really reminds me of Christian in the below photo.
Zachariah's mouth crease wasn't as flat when he was little. His diagnosing features have become much more prominant, even since his diagnosis. He is the same age as Christian is now in this photo.



3 comments:

  1. not sure what to say, yet yearning to say something that would encourage, affirm the path you're walking, and comfort all at the same time. but i'm at a loss for words...

    those boys are PRECIOUS!!!! beautiful babies that are in a beautiful family, and I hope god chooses to keep them there. Thank goodness that they are REALLY in HIS hands, and not the system's.

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  2. I LOVE these babies!!! They just gotta be ours!!!

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  3. I have no words.. I am so far from anything like this that I am no one to say anything. I am praying so hard for you and your family and these beautiful boys. You are doing such an amazing job, Maury. All of you.

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