Hydroxyurea In Pregnancy – A Startling Testimony

The Shakirs: Eelaan, Eiliyah and proud mom

I took hydroxyurea throughout my pregnancy and exclusively breastfed my baby for six months while still on the medication

Medical wisdom suggests that a user must discontinue the use of hydroxyurea (HU) months before trying to conceive or get a woman pregnant. Maldivean Aishat Shifneez Shakir, 36, obediently gave up a medication she had taken for years to manage her sickle cell beta thalassemia (SBthal). She got pregnant few months later, no sooner than which, all hell broke loose. Crises after crises nearly did her in. And then she was rewarded with a miscarriage at 11 weeks.

Eiliyaah and Eelaan

Second Pregnancy

At her second pregnancy, the doctors insisted on discontinuation but made up for it with blood transfusion twice monthly. Despite the regular transfusion, Shifneez lapsed into regular sickle cell crises culminating in multiple admissions at the Intensive Care Unit of Narayana Hospital, Bangalore, India for weeks at a stretch. Worse still, she lost her spleen, had iron overload and was found with avascular necrosis of the right hip.

In for early delivery by caesarian section at 36 weeks, the baby weighed 2.4kg. He was named Eelaan. Eelaan will be 10 this year.

Third Pregnancy

Shifneez and Eiliyaah

Still on hydroxyurea, Shifneez conceived the third time. It was initially decided that she stop taking HU in favour of regular blood transfusion. Unfortunately, her veins had all but collapsed and she was unable to complete any transfusions. Two weeks into pregnancy, her PCV began to plummet.

‘All this spurred me – on my own wisdom as a lay person – to resume taking HU.’

Against medical advice – against the grain of global medical wisdom – Shifneez took HU throughout her pregnancy and even after delivery.

The pregnancy was plain sailing, no crises whatsoever, no blood transfusion and no hospitalization until delivery at 40 weeks. Pretty Eiliyah weighed 2.9kg. Her mother had been on HU from before conception to delivery.

And, what was more, throughout six months of exclusive breastfeeding.

Eiliyaah

Perfectly Healthy Child

In July, Eiliyah turned five. Her mom admits to being anxious for the baby’s health – had she been selfish continuing to take a drug feared for its possible toxic effect on fetuses? Had she sacrificed her baby’s health on the altar of her own morbid fear of sickle cell? She had broken a medical taboo, was her baby going to suffer the consequences?

Her unfounded fears were assuaged as the child grew in physical and mental strength; and those fears were finally entombed as her growth has been remarkable. At four, Eiliyah loves music and is learning to play the piano, speaks two languages and displays exceptional skills beyond her age.

Jordan: Shifneez at the International Conference on Thalassemia and Hemoglobinopathies 2016

International Conference on Thalassemia and Hemoglobinopathies

In November 2016, sickle cell and thalassemia patients, healthcare professionals and health policy administrators from Africa, the Maghreb and the Middle East participated in a conference sponsored by the Health Ministry of Jordan. Shifneez was there to present a poster about her unique experience with hydroxyurea.

‘ I am grateful to have been given the opportunity to participate in several different international platforms to share my story with hydroxyurea for patients, care givers, healthcare professionals and policy makers.’

I was able to demonstrate that more needed to be done to allay the fears of doctors and patients about the safety or otherwise of HU. I hope the story of my personal journey can break the barrier and open up the possibility for others like me to reach their milestones and have their dreams come true.’

MORE ABOUT SICKLE BETA THALASSEMIA

Sickle beta thalassemia is an inherited condition that affects hemoglobin, the protein in red blood cells that carries oxygen to different parts of the body. It is a type of sickle cell disease. Affected people have a different change (mutation) in each copy of their HBB gene: one that causes red blood cells to form a “sickle” or crescent shape and a second that is associated with beta thalassemia, a blood disorder that reduces the production of hemoglobin. Depending on the beta thalassemia mutation, people may have no normal hemoglobin (called sickle beta zero thalassemia) or a reduced amount of normal hemoglobin (called sickle beta plus thalassemia). The presence of sickle-shaped red blood cells, which often breakdown prematurely and can get stuck in blood vessels, combined with the reduction or absence of mature red blood cells leads to the many signs and symptoms of sickle beta thalassemia. Features, which may include anemia (low levels of red blood cells), repeated infections, and frequent episodes of pain, generally develop in early childhood and vary in severity depending on the amount of normal hemoglobin made. Sickle beta thalassemia is inherited in an autosomal recessive manner. Treatment is supportive and depends on the signs and symptoms present in each person.

From https://rarediseases.info.nih.gov/diseases/10333/sickle-beta-thalassemia

For more on Shifneez and her advocacy work, visit: https://shifneez.blogspot.com/

instagram: sicklecellmv

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