“My son, C, is turning 4 this year. He is a really jovial, smart and active boy. He also has G6PD deficiency, an inherited condition in which the body does not have enough of the enzyme glucose-6-phosphate dehydrogenase, or G6PD, which helps red blood cells function normally.
This deficiency can cause haemolytic anaemia ― a form of anaemia caused when red blood cells are destroyed (haemolysis), usually after exposure to certain medications, foods or even infections.
All newborns in Singapore are tested for G6PD deficiency at birth, and our paediatrican informed us that C had it, when he was just 2 days old.
“This deficiency can cause haemolytic anaemia ― a form of anaemia caused when red blood cells are destroyed (haemolysis).”
As a newborn, he had very bad jaundice, so he was transferred to KK Hospital till he was 15 days old.
During his stay in KKH, the doctor almost had to give him a blood transfusion because he had haemolysis. C was attached to an electrocardiograph machine and was closely watched by a group of doctors for three days. He was only discharged after his blood count stabilised, and when his heartbeat was no longer erratic.
Our relief was short-lived when we returned to KKH for another review when he was 4 weeks old. This time round, his blood test results showed that that his red blood count was still declining.
He had to be admitted immediately, and we were told to prepare ourselves in the event that he’d require a blood transfusion. Thank God, his blood count stabilised ― again! ― and he was discharged after spending two nights in the hospital.
C’s diagnosis came as a shock, but then, my sister is also G6PD deficient.
I knew, from my mum, that G6PD deficient people have to avoid fava (broad) beans, mothballs and certain medication. As I’d suspected that this condition is hereditary, I did a bit of research during my third trimester with C.
Besides my sister, there were also signs that I was partially G6PD deficient. When I was pregnant, I was plagued with bad tension headaches and giddy spells, and I had to go on hospitalisation leave during my last trimester.
At first, I didn’t think that it wasn’t anything out of the ordinary, as I’d had frequent tension headaches previously. But at that point, I had taken so much paracetamol that my body was failing to respond to it. Doctors had to load me up with stronger medication like Anarex and mefenamic acid to keep me going.
After reading up about G6PD deficiency, I’ve come to realise that those crazy episodes of headaches and giddy spells were, in fact, symptoms of low-level haemolysis. After giving birth to my son, I confirmed that I was partially G6PD-deficient.
“My initial reaction was to apologise to my husband and my in-laws for passing the mutated genes to C.”
All that braised meat, Lao Ban tau huay, Mr Bean soymilk, yong tau foo and Tiong Bahru meat pau, which I’d frequently consumed while I was pregnant, had actually blown my headaches out of control.
Furthermore, all the blood tests that I had taken before always showed that I was slightly anaemic, which further affirms the fact that my red blood cells were breaking down more than non-G6PD deficient people.
My initial reaction was to apologise to my husband and my in-laws for passing the mutated genes to C. However, I would like to tell all new mums whose kids are G6PD deficient ― please do NOT apologise to anyone. Being G6PD deficient does not mean that your child is unhealthy, and it’s in no way your fault.
C is turning 4, and other than mild eczema and having hyper-sensitive airways, he is pretty healthy. While the doctors at KKH encourage us to feed him iron supplements to bring up his blood count, he is not under any medication or treatment.
What we have to enforce, though, is a strict diet, making sure that whatever he consumes doesn’t contain any contraindicated ingredients. These include fava beans, all types of legumes (including soy and peanuts), menthol, bitter gourd, blue artificial colouring, most processed foods and some chinese medicinal herbs
Despite the strict diet restrictions, he is pretty much like any other kid out there. He loves to read, he loves to ride on his balance bike, and to speed down the slope in his favorite red scooter. He has recently found a new activity he loves ― baking with me.
We’ve been constantly educating him on ingredients that he has to avoid. Hence, he is very careful when it comes to food. When he sees dishes cooked in a dark sauce, he will notify me immediately, ‘Mummy, this food has soy ― it is not safe!’
“Eating out may be a bit of a hassle, as he’ll need to constantly check on the ingredients in his food.”
When my husband or family members want to give him foods, he will always turn to me and ask, ‘Mummy, is this safe? Does it have soy or soy lecithin?’ I'm pretty blessed that he hardly kicks up a fuss when I tell him to give his candy away because it is not safe.
But we know that he has yet to officially start his school years, and we foresee that he may feel out of place when he notices that his peers can simply order any food from the canteen, while he may have to bring a packed lunch from home.
In fact, eating out may be a bit of a hassle, as he’ll need to constantly check on the ingredients in his food, and it may hinder him from fully enjoying the company of his friends.
Right now, going overseas can be troublesome as we need to find an apartment which has a fully-equipped kitchen, so that we can cook him a safe meal.
Triggers may be present everywhere. There may be fava beans in the food court, mothballs in public bathrooms and on the clothes of people around him, in the supermarket and shopping centres. He could be standing right next to an elderly person who needs to apply medicated oil ― that contains triggers like menthol and camphor ― while travelling. Basically, in spite of our efforts, he may be experiencing low levels of haemolysis all the time.
Visits to the clinic or the hospital can be pretty stressful, too. Most doctors have a rather basic knowledge of G6PD deficiency, and we have personally had pretty bad experiences with doctors who dismissed our concerns and proceeded to prescribe him medication that may cause oxidative stress to his body.
Take paracetamol, for instance. I am sure that nine out of 10 doctors will tell you that it is very safe for a G6PD-deficient patient. Only one out of the 10 may stop to listen when we tell them that paracetamol will reduce glutathione, which can, in turn, lead to haemolysis.
I had previously joined a support group created by Dale Baker, the American author of Staying Healthy with G6PD Deficiency: A valuable reference guide for eating safely, and I realised that people in Singapore needed a more relevant, local discussion group. For instance, suggestions for which restaurants offer foods that are safe for us, where can we get certain items in Singapore, and perhaps also, which doctors are well-equipped with G6PD knowledge.
“We have personally had pretty bad experiences with doctors who dismissed our concerns and proceeded to prescribe him medication that may cause oxidative stress to his body.”
So, I set up a local support group for parents of G6PD deficient children to reach out to more Singaporeans and help them be better equipped with the right knowledge.
Through this group, I came to realise that a lot of people lack of support and knowledge when it comes to dealing with as G6PD deficiency. Advice from various professionals, plus their research on the Internet just adds to their confusion.
A G6PD deficiency is not as harmless as many people think, so please take it seriously. I would urge people to discard the mentality of ‘a little doesn't hurt’, because it does. Long-term low level haemolysis causes stress on our bodies, and an abnormal strain on our organs. Get information about G6PD deficiency here.”
Jessica Ang, 28, mum to C, 4, live in Singapore.
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