It’s 4am. The stillness of the night is broken by the bawl of a baby, followed by hurried footsteps and the gentle crooning of a woman. She lays her on the changing table, talking in a soothing tone as tears rush down the infant’s face as if in a desperate attempt to get away. As the diaper comes off, there is a gasp and the mother wells up too.
“There was blood in the diaper,” she tells Gulf News, recalling that night.
For Egyptian expat Nourhan Tarek, pregnancy came when she least expected it, after three miscarriages and a failed round of in-vitro fertilisation (IVF). She says: “The doctors they said that my miscarriages were mainly due to genetic abnormalities and something wrong with the cells of the embryos, they weren’t dividing properly. And this is why they terminated themselves. I would get pregnant but it would not turn into a live birth – it always ended in a miscarriage.”
She tried for two years and then stopped, giving her body time to rest. “This pregnancy came very spontaneously one year after the IVF cycle, without any effort. It was a surprise. I was scared every time I would go to the doctor, I would think this is ending now. I was surprised to find the heartbeat. And I was surprised to find that the heartbeat continued on my second visit. And on my third visit. Every time I would go, I would expect him to tell me, ‘it’s over’. But it went on, and it was easy.”
“Looking back,” she laughs, “the pregnancy was the easy part.” At the end of her term, she had to have an emergency C-section, which she says may account for her daughter’s food intolerances.
“I was very, very persistent about breastfeeding even though she could not latch and the milk was delayed – for about three days, there was no milk. In the hospital, they told us we have to give her formula because [if she loses weight] she will get hypoglycaemia; her blood sugar will be very low. So we started her on the formula – it was cow milk based,” she recalls.
In the days following, a mix of formula and mum’s milk was given to the child. “She wasn’t doing great, she was losing weight; we don’t actually know till now if that’s because of allergies or because my milk was not enough but we had to supplement with the formula because she was not gaining weight. Then the doctor said, ‘we need to know how much she’s getting’, so I had to pump to see how much she was getting. I switched to that and, of course, after getting the bottle, she refused to latch again,” Tarek says.
Babies tend to lose weight in their first two weeks of life, but shedding more than 10 per cent can cause temperature regulation issues. Young Tarek, who weighed 2.78 kilos at birth, continued on formula feed in an effort to get back to her birth weight. The reflux and the colic were all put down to general growth phases. Especially since she also had jaundice, which meant she needed more nutrition, and more food. As her weight crept up, the family was relieved; their baby was finally doing well. And they travelled to Egypt.
It was during this visit, one sleepy night, when the worried mother discovered the blood in the nappy. It was like a switch went off in her head, she says. “I saw the blood and began to make the connections; her poop always had mucus and it was more towards the green side, but I didn’t link it to allergies before,” she says. “I had a friend who had a baby three or four years ago, and she was going through the exact same thing, food intolerances.”
Getting a diagnosis
“I stopped the formula immediately – I remember it was 4am and I had to call a pharmacy because she was hungry for her next feed and at that time I had seen the blood. I knew my milk was contaminated so I couldn’t give her the milk, I couldn’t give her the formula. Because I’m a pharmacist I know the name of the food insensitivity brand, so I got it for her. I took her to the doctor in the morning and once he saw the picture of her poop, he told me, ‘This is most probably food allergy and cow milk allergy’. This is where it started.”
“I had to eliminate dairy at the beginning. The first few days I was very, very scared, I knew some babies have multiple allergies it’s not just cow milk protein, so I basically eliminated everything. I was just eating a few things- chicken, dates, coconut milk and a few vegetables – and I kept to this for maybe two weeks. That’s when she started getting better, gaining weight, blood in stool stopped. Things changed completely because I was on this restricted diet. I stopped my supplements because they were made of gelatine too; however, I started to have bone pain. When I went to a paediatrician, he said, ‘Everything’s gone back to normal, she is doing great, she’s gaining weight’. He said, ‘There’s no need to do this [giving up supplements] … take your supplements and keep trying new foods’,” she says.
So Tarek started introducing one food item a week and watched for symptoms.
“I did meat. The day I started the meat I saw her getting a rash on her face and when I stopped the meat the rashes went. I started to test with seafood - shrimp – which gave her very bad allergy. Her allergies are not immediate, so after three days [of shrimp] she started vomiting heavily. I stopped the shrimp. I tested corn, no symptoms. I tested rice, so symptoms. Bread and gluten, no symptoms. Somehow though, even though she’s not showing any symptoms, her calprotectin is elevated, so I started to cut some items back. The doctors said, ‘Let’s just try to eliminate the gluten, it is the most suspicious one’. So again I’m gluten free. But then her calprotectin is still elevated, in fact it’s increasing, so something else must be the cause – maybe the rice, I’m not sure. Now I’m back to my very, very restrictive diet, because I still can’t find what the problem was.
“A few days ago I saw blood in the diaper again,” she sighs. “We're still struggling to figure it out.
“I'm tired, I'm so tired. But it's okay. She has some hard days of colic and pain. But other than that, she's a happy kid. So this is the most important thing. For the food, it’s fine. I really don't care. Because it's my baby … The only thing is sometimes some days I find it difficult, I want to find something that is nutritious to still keep my milk going. So I can feed her.”
Taking food along on trips
Tarek has learnt to adjust to her new reality. “I cannot eat outside at all, I have to read every single label just to make sure there's nothing wrong or no hidden allergen. All my meals are prepared at home. And when I'm going out with friends or anything, I bring my tea or my pack of herbal drinks or something and a box having some cucumber and veggies,” she explains.
Tarek is a full-time working mum – and with that comes mum guilt by the mountain full. “Sometimes, I feel like I'm not carrying her enough. I'm not holding her enough because I have to do the pumping someone else has to hold her. So I have to make my maid or my husband hold her while I finish pumping and it would have been easier if I can just hold her more,” she says, adding that she hates pumping more than the food restrictions.
“I think maybe if I was breastfeeding directly, it would have been easier… pumping is a lot of work. And I'm stuck to the machine. Pumping is not very smooth,” she says, listing issues such as blocked ducts and milk production problems.
For now, Tarek is taking it a day at a time and hoping her five-month-old grows out of it.
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