Three women discuss their thalassemia pregnancy experience

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This video on thalassemia and pregnancy was recorded on October 18, 2018.

The three women to my right (in the video) include:

Margarita Daskalakis, a thalassemia intermedia patient and mom of two.

Maria Hadjidemetriou, a thalassemia intermedia patient and mom of one.

Jenine Abruzzo, a thalassemia major patient and mom of two.

Maria and I used to go to the same clinic for medical treatment. I’ll never forget seeing her for the first time when she was pregnant. She was the first regularly transfused woman I’d ever seen carry a child.

Smiling ear-to-ear, Maria looked at me and said, “my nutritionist had me on evening primrose oil for pregnancy, Jo… it worked!”

Getting pregnant can be difficult for women with severe forms of thalassemia (thal). Iron overload negatively affects many processes in the body and places a strain on one’s heart. Those factors are just a few that must be in order before conceiving, otherwise the prospective mother is placing herself and her fetus at great risk.

Pregnancy can also be a challenge for women with thalassemia minor. Having both regularly shaped red blood cells and smaller, flatter cells makes women feel more fatigued, especially while carrying. Taking folate and vitamin B-12 helps many feel better during pregnancy.

Some women with thal minor experience severe drops in their hemoglobin level (i.e., around 7-8 g/dL), which does, in fact, require them to receive a blood transfusion while carrying.

My mother is one of those few women who needed a transfusion during her pregnancy with my sister. Fortunately for them both, everything turned out great and my sister was born without thalassemia trait (thalassemia minor, thalassemia trait, and thalassemia carrier are all different ways of saying the same thing).

Since my father is also a carrier of thalassemia, my parents had a one-in-four chance of conceiving a child without the thalassemia mutation (my sister), one-in-four chance of conceiving a child with transfusion-dependent thalassemia (me), and two-in-four chance of having a child with thalassemia minor.

Women with thalassemia minor should not assume that they need iron supplementation just because they’ve been diagnosed with a form of anemia. Instead, a full iron panel needs to be taken in order to test for iron deficiency. If a physician determines that the expecting mother has iron deficiency then she can begin taking iron supplementation. This same holds true for anyone attempting to use an iron supplement. Iron is toxic to those who do not have a deficiency.

All women should speak to their doctor about taking a folate supplement while pregnant. Folate, a naturally occuring version of vitamin B9, is well known for its ability to prevent fetal birth defects. In fact, this is the primary reason why the United States Food and Drug Administration began fortifying all grains (i.e., flour, bran, etc.) with folic acid in 1998. As an aside, folic acid is a synthetic version of vitamin B9.

Sign-up for my newsletter to discover more information about vitamins for thalassemia, as well as which foods naturally contain these vitamins, what time of day to take them, and how to combine various supplements.

Men with transfusion dependent thalassemia also have fertility troubles resulting from things like hormone deficiency, high iron levels, poor sperm count, and sperm DNA fragmentation.

There’s so much to talk about when it comes to fertility and pregnancy in thalassemia that I’ll save the rest for future blog posts.

For now, please enjoy watching our discussion about thalassemia and pregnancy and if you’d like, post your comments at the bottom of this article.

Josephine Bila (left, in white/black), Margarita Daskalakis (in red), Maria Hadjidemetriou (in green), and Jenine Abruzzo (in purple)

Here’s where to find us on Facebook:

Josephine Bila (me), a thalassemia major patient

Margarita Daskalakis, a thalassemia intermedia patient

Maria Hadjidemetriou, a thalassemia intermedia patient

Jenine Abruzzo, a thalassemia major patient

Wishing you a safe and healthy pregnancy.

Josephine