When my second child, Ayla, was born, I thought the worst part of it was seeing her discharged with a hep lock because of UTI. But when the newborn screening results came, hubby and I discovered that she has G6PD deficiency.
I felt my world crashing down.
But what is G6PD deficiency?
Glucose-6 phosphate dehydrogenase (G6PD) deficiency is a condition wherein a person’s red blood cells lack the G6PD enzyme. With little or no G6PD enzyme, the red blood cells easily erupt or are destroyed when exposed heavily to certain triggers. The effect is hemolysis, wherein the red blood cell count decreases, and the destroyed red blood cells go to the liver, which produces bilirubin. When the bilirubin count in the body increases, this results to jaundice. In worst cases, bilirubin goes to the brain and affects it, causing mental retardation or even death.
This condition has no cure, and a person with G6PD deficiency would have to live with it throughout their lives.
G6PD deficiency is hereditary, an x-chromosome linked disorder. That’s why, after a confirmitory test which resulted positive to the condition, I got depressed. I blamed myself, maybe I didn’t take care of myself too much (even when I followed my OB-Gyne’s instructions) so the baby had it. For nights, I cried because I was confused… and afraid. Afraid for my baby. Will something happen to her? And if so, what do we do?
That’s why I did a lot of research about G6PD deficiency. With the technology we have today, it was easier to find out more about this condition. One of the websites that was pretty helpful is g6pddeficiency.org, created by Dale Baker. He himself has G6PD deficiency. In the website, he gives details on living with the condition, and the food and drugs to avoid to prevent hemolytic crisis. Among these are fava beans, anything menthol (as in candies and even Vicks), ampalaya, soy/soya, and artificial blue coloring.
Locally, the Newborn Screening Center also gives information to parents of kids with G6PD deficiency. It gives a brochure about G6PD deficiency and the list of things to avoid. There’s also a Facebook Page, G6PD Deficiency PH, where I can consult fellow Pinoy parents who have G6PDD kids. What’s also helpful about the FB group is that it has bookmarked polls, discussions, and frequently asked questions for every member to see.
Learning that I have the available resources, the feeling of dread and uneasiness got less. I learned that I am not alone in this battle. And that, while G6PD deficiency is a benign case, we can have control over it. As long as we take only what we must and avoid what should be avoided.
That also means a change in lifestyle for me. Since I am breastfeeding my baby, I am now careful of what I eat and put on my body. I guess it’s also all for the better, because it would encourage me to eat well and think twice about using certain products that can also be harmful to my body. It’s also teaching me to read the labels.
Now, I’m less afraid of G6PD deficiency, knowing that I have the knowledge and support of people around me (good thing, too, that my kids’ pedia knows something about G6PDD). I’m still no expert; I’m still educating myself about it. But at least the heaviness in my heart has disappeared and I’m no longer blaming myself that it happened to my daughter.
My child has G6PD deficiency. And we are not afraid of it. With what we know and the support of our loved ones, we can overcome the challenges this condition may bring.