Each parent have their own struggles, but when it comes to caring for our children, we’re all on the same boat. Mommies, read this mom’s experience of caring for a G6PD positive baby.
In her story, you’ll read:
- What is G6PD?
- How her son’s condition affects her day-to-day activities
- Caring for a G6PD positive baby
I’m a mom from the Philippines and my son has Glucose-6-Phosphate-Dehydrogenase Deficiency or better known as G6PD. I want to share what it’s like to be me – a parent caring for a G6PD-positive baby.
How we learned about his condition
A few days after my son was born, a friend dropped by our house to see him. She was so happy to see my newborn so she held him and even took a picture with him. She then pointed out to me that there was a small bump near my baby’s navel, and it appears that it has pus in it. I didn’t know how it got there. I got worried so I decided to take him to the pediatrician for a checkup. My mom accompanied me and the baby to the hospital.
After checking on my newborn, the doctor told us that baby would have to be admitted in the hospital for a week because he had jaundice. He was only 6 days old at the time. I was so nervous, especially when they had to insert an IV needle on him, and I left the room and let my mom watch the nurses while doing it, and I was breaking down in tears.
Shortly after that, the doctor explained in more detail why my son had to be admitted. Turns out that the baby has sepsis, an infection in the blood that he got when I had a urinary tract infection when I was pregnant.
As much as I wanted to break down about my newborn’s condition, I couldn’t because he was so strong. He was a fighter. After 3 days of staying in the hospital, the doctor told us that we can already go home to complete his medication. I was so proud of my son for fighting, and I think my liquid gold helped him recover faster.
After a month, I received a text from the lying-in clinic staff saying the newborn screening result was ready and I needed to go there right away. I asked my mother to go there as soon as possible, and when she got there, the midwife explained that result showed that my son is positive for G6PD.
Caring for a G6PD positive baby
I got so anxious upon learning that so I did some research about it and I found out that he got it because my blood and his father’s blood were not compatible and that he got his condition from me. I couldn’t believe that something like that could happen. But I cried a lot and blamed myself for that.
Four months later, he had to undergo a confirmatory test, and despite our hopes for a favorable result, he tested positive with a score 10.91 (the normal for babies 6 to 12 months up was 12).
This was the time that we accepted our son’s condition. And instead of sulking, I decided to learn more about G6PD. I found a group on social media called G6PD Community where moms have kids who had the same condition as my son.
I read on some posts that G6PD is when the body doesn’t have enough of an enzyme called G6PD (glucose-6-phosphate-dehydrogenase). This enzyme is responsible for the proper function of the red blood cells, and a lack of this enzyme can cause hemolytic anemia.
That got me thinking: it is not an allergy nor a disease, but even though it has no cure, as long as you never expose your child to those on the “things to avoid” list, nothing would happen to him. So I armed myself with the right information to make sure he would be okay.
The main thing to know if you are a parent of a child with G6PD is all the food restrictions. When my son started eating solids, it was easy for me to prepare the food that he would eat. But as he grew older, I can’t feed him purees anymore so I had to think of different dishes to cook that he could eat.
I memorized all the foods that were prohibited for a child in his condition. Sometimes I would feel sad, that he couldn’t even have simple things like taho because even though it’s healthy to most, children with G6PD could not have soy.
Having a G6PD-deficient son is really not easy. You need to be picky when it comes to what to feed him because if he ate something that’s not allowed, it may have a negative effect on his health.
So mommies who are in the same boat, always be careful about what food you’re giving your child. Some say that it’s okay to give small amounts of restricted food, but I just wouldn’t risk it. For me, it’s better to be careful than be sorry.
Parents’ Guide: 7 important things you need to know about newborn screening
ALAMIN: Ano ang G6PD deficiency, at paano ito naiiwasan?
Parents’ Guide: Here’s what you should know about G6PD deficiency in children
My firstborn is now 5 years old and healthy as ever. I gave birth to his younger brother, and I’m lucky that he doesn’t have G6PD. They say not all of your children will have it. I hope that if I ever got pregnant again, that he or she won’t have the condition too, as it’s really challenging to live with.
Despite the struggles and the challenges, I still thank God for giving me the opportunity to become a mom, and for helping me care for a G6PD positive baby.
So to those parents who have a child with G6PD, don’t lose hope. Everything will be okay as long as you stick to what’s recommended and follow the food restrictions.
To parents of children with special needs, and every parent who’s struggling, just keep fighting. Every child is a blessing. Let’s give our love to them and care for them the best way we know how.