Gray Hairs and Heterotaxy

They say having children will give you gray hairs. Well, Ryder certainly left his mark! My first gray hair… front and center. I’m sure he added a few more to his daddy’s gray numbers too. Sam hates them, but I think it makes him even more handsome!

I wanted to take this time to make you aware of something that I knew nothing about four months ago. (I’m pretty sure it has something to do with that gray hair I mentioned…) Today is Heterotaxy Syndrome Awareness Day.

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Ryder was diagnosed with Heterotaxy syndrome during our first appointment with the pediatric cardiologist at the Fetal Care Center. Not sure what Heterotaxy syndrome is? Well, here are a few facts:

1. Heterotaxy syndrome is a rare birth defect that results in certain organs forming on the opposite side of the body.

2. Babies with Heterotaxy are usually first identified because they have structural problems with their hearts or livers.

3. It occurs in 1 out of every 10,000 births and is equally common in boys and girls.

4. The heart is involved in 80% of Heterotaxy cases.

5. No two cases are alike and prognosis is different for each child.

6. Most children who survive the first few months of life often end up doing reasonably well long-term with a good quality of life and only minimal limitations.

7. The cause of Heterotaxy is unknown.

Ryder died from complications of a heart defect caused by Heterotaxy and I’m so glad there’s an awareness day! On this day, we can celebrate the survivors, remember the angels who lost their fight, and honor those in the medical field who work hard each day to keep these babies healthy.

With hope and love,
Kristen

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