HEMOPHILIA IS ALMOST AS RARE AS THE BIRTH OF TRIPLETS

“Hemophilia is almost as rare as the birth of triplets. In the United States, there are about 20,000 men (about the seating capacity of Madison Square Garden) with hemophilia, 80% of them have hemophilia A and the other 20% have hemophilia B. Although women very rarely have hemophilia, they can carry the gene that causes it.” HOG Handbook.

For Jessenia Arce assuming motherhood was a challenge. Since she became pregnant, she was aware that there was a 50% probability that her child would be born with hemophilia, since she, in addition to being a carrier of the gene, suffers from hemophilia and von Willebrand’s disease.

ASSUMING MATERNITY & BEING HEMOPHILIC. THIS WAS THE BIRTH OF JASIEL

In this case, Jessenia knew what was happening in her body, but 50% of women with hemophilia are still unidentified, so very few receive specialized care and a diagnosis of coagulopathy, according to the platform Cuídate Plus, the hematologist at the Children’s University Hospital Complex of Gran Canaria (Spain), María Falcón. 

Arce’s pregnancy involved more care and visits to the doctor than a normal gestation; however, living with hemophilia and coming from a family with a mother and siblings with this condition made her “well informed,” she says. 

She also says that throughout her pregnancy she didn’t encounter problems and did not present any type of bleeding, but these complications arrived at the delivery. This is because coagulation levels in carriers of hemophilia, although variable, tend to increase physiologically during pregnancy, and decrease after giving birth. 

After overcoming the difficulties of childbirth, Jessenia was able to see her son, Jasiel. It had been four days since she gave birth. 

The baby, Jasiel

At birth, a blood sample was taken from the umbilical cord to detect if Jasiel had been born with hemophilia. Two weeks later, the baby was diagnosed with hemophilia A at 2%. “I was expecting it,” says Jessenia. 

Jasiel is now a little over a year old and so far, due to falls that no matter how much they would have wanted to avoid – are normal in children, they have had to injected him 4 times with factor. 

 Jessenia says that her little boy began to crawl on the bed and then on the carpet, as a way to avoid injuries. Today he is already taking his first steps and the mother assures that he gives her a lot of stress, but “I have to adapt, he has to grow.” 

Jasiel already has four teeth and so far, he has not bled; his mother knows that at this stage she should be vigilant and check his gums. For now, she does not want to think about when she should send him to school as she prefers to live one day at a time. 

“I’m going to have to prepare my son. I am going to have to sit with him and teach him about risks and care, not only at school but in his daily activities. Explain to him that he is normal, but he has special things and cares.” 

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