Beeld: Getty Images
Two weeks after giving birth, Marieke was told that her daughter has a serious hereditary disorder: sickle cell disease. She was somehow prepared for this and yet not at all.
Marieke (48), mother of Tate (13):
“I was eight months pregnant when my friend’s Antillean mother came over from Curaçao. She told me between nose and lips that her son is a carrier of the sickle cell gene. I was dumbfounded. Why had he never told me? And what did this mean for our child?
Sickle cell disease
I had never heard of sickle cell disease. In people who have this disease, the red blood cells are not round, but hook-shaped, like a sickle. When they clump together, intense pain attacks – crises – occur that can last for days. The disease mainly occurs in black people and a child can only get it if both the father and the mother are carriers.
Since I come from Overijssel, my boyfriend at the time had not thought about it at all when we wanted to have children. His mother didn’t foresee any problems either: ‘You’re a white fart, nothing can happen.’ Still, it didn’t sit well with me. Rationally I knew, of course, that the chance that I would be a carrier of the sickle cell gene was nil. But my gut said: I wouldn’t be surprised if our child has it.
Gene abnormality
Tate was two weeks old when the doctor called with the results of the heel prick. I had a top pregnancy and birth, which left me on a giant pink cloud. I was no longer concerned with the question of whether Tate had sickle cell disease. The doctor’s diagnosis therefore came as a shock. So anyway, I thought. But also: how?
According to the doctor, it had to do with a gene mutation on my side. This had to be investigated further, but there was no doubt about the result of the heel prick. It later turned out that I, without knowing it and without having any complaints, have a gene abnormality that causes my red blood cells to break down early. In combination with her father’s sickle cell gene, this has resulted in sickle cell disease in Tate.
Future
I felt extremely guilty. This is the last of everything you want to pass on to your child. All kinds of nasty thoughts haunted my head: if my girl is going to be in so much pain, just take her with you. Of course I was packed with hormones, because afterwards I thought: how can I think such a thing?
Tate was examined at the hospital. A doctor explained that the course of the disease varies greatly: one patient has a few attacks per year, the other has to undergo a blood transfusion every three weeks.
We were also told that fetal blood does not sickle. Tate would therefore have no problems in the first half of the year. That gave me a moment to catch my breath, but I was very worried about her future. What did it look like? My sister-in-law’s son, then two, happily jumped across the room with us. If only Tate was already there, I thought. She was still so small, I couldn’t read anything from her. Very difficult.
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Process
After the first six months I was very alert to signs of a possible crisis. With every ache I checked that her eyelids didn’t turn white or that her stomach swelled, which happens when blood starts to sickle. She also had to go to the emergency room immediately as a precaution if she had a fever of 38.5 degrees or higher. My in-laws in Curaçao at the time told stories about people they knew with the disease. Some were not bothered by it. That gave hope.
“I checked with every pain that her eyelids did not turn white or that her stomach swelled”
Meanwhile, Tate’s father and I supported each other – caring for her brought us together. Still, I struggled to place the news. I’m a talker, it’s the way for me to process things. This time it didn’t work. Every time I told someone about the disease, I cried. The first months I blamed it on my hormones and the guilt. You want to take over your child’s illness, but you can’t do anything – that powerlessness eats away at you.
After a while I realized that I needed help processing this trauma. Through EMDR therapy I learned to link my negative thoughts to positive thoughts. After a few sessions, my intense emotions subsided. When I talked about Tate’s diagnosis, I stopped getting emotional.
In the meantime she was a happy toddler who developed well – that also helped. She gave it better and better herself if she was bothered by something and luckily that remained with minor complaints. The older she got, the more I dared to think: maybe she will fly through her childhood without any problems.
Crisis
At the age of six, Tate contracted pneumonia. According to doctors probably caused by her illness, but I didn’t want to deal with that myself. Tate had never experienced a pain attack typical of sickle cell disease. Maybe the pneumonia was just bad luck?
But three years later she had her first crisis and I couldn’t ignore it anymore. She was hospitalized with severe abdominal pain. In a fetal position and on a morphine pump, she tried to meditate her way through it—introverted, as in childbirth. I held her tight and talked her up, but wanted to cry.
After a week she was allowed to go home. Muscle loss made her walk so stiff, she looked like an old woman. My confidence had taken a big hit. What now? Was this going to happen every year, every month? I am a positive person and was not afraid, but I had to find a new normal. Accept that it could happen again.
A new normal
After Tate we had two more children: Miles (12) and Joss (9). I did chorionic villus sampling in both pregnancies. Not to possibly abort the pregnancy, but to prevent me from falling again. I wanted to be prepared for bad news. Fortunately, that didn’t happen – neither Miles nor Joss have the sickle cell gene. Well, the mutation that I have, but it does not cause any complaints. They both live with great concerns around their sister. I regularly get asked when Tate will be admitted.
At the beginning of this year, she had to go to the hospital because of a pulmonary embolism. As a single mother – my ex and I split up when Tate was five – something like this brings a lot of regularity in addition to the worries. I always have to have someone on hand, including my wonderful parents, if I need to take Tate to the hospital urgently.
“It often leads to misunderstanding in the outside world”
Fortunately, she is fine now. She takes her medication and pays attention to triggers, such as large temperature differences, and listens to her body. This often leads to misunderstanding in the outside world. Teachers don’t take her seriously because she appears to be fine. Then she sits aside with gym to catch her breath, but they urge her to keep going. How many times has she had to explain that she is quickly deprived of oxygen due to a low hemoglobin value.
Few people in the Netherlands know what sickle cell disease means. I hope there will be more awareness and research, and eventually a drug that prevents blood from sickling. Until then, I’m teaching Tate not to let it rule her life and enjoy everything to the fullest. Because you are not your disease and your disease does not define who you are.”
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2023-08-27 15:14:27
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