Baby Marichuy fights for her quality of life and with the lack of medicines; must take 12 drugs

Marichuy was born in 2020, in the middle of the Covid-19 pandemic. At four months, her mother, Karen Esparza, noticed that she was not eating well, so she took her to a pediatric consultation. Doctors told her that the baby was immature to suck, that it was nothing to worry about; However, she was not satisfied and went to different specialists until she was diagnosed with dilated cardiomyopathy.

Dilated cardiomyopathy is characterized by enlargement of the left ventricle of the heart and an alteration in its contractile capacity. Because of Marichuy’s age, she is not a candidate for a heart transplant, so she receives medical treatment, which has meant a problem for the Carballo Esparza family, since in the Federico Gómez Children’s Hospital of Mexico – where the minor is treated – They have not had all the medications. This situation has motivated Karen and her husband to hold raffles and charity events, in order to give their daughter a good quality of life.

“We went from hospital to hospital, until the XXI Century Medical Center did studies and found that he had a very large heart. They explained to us that it was dilated cardiomyopathy, but that my daughter was not a candidate for surgery because of her age, because of her weight, and what they have told us in the children’s hospital is that the best they can do is give her palliative care; In some hospitals they have even told me that my daughter will not be three years old, and as a father that does not matter, what we are looking for is that she has the best quality of life the time she is with us ”, he says in an interview with EL UNIVERSAL.

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Marichuy takes medication to treat her dilated cardiomyopathy, an enlarged left ventricle of her heart.

Before arriving at the children’s hospital, Karen sought help from the civil organization Kardias; recalls that, initially, they took good care of Marichuy and confirmed the diagnosis, but they also reiterated that the girl is not a candidate for surgery and, in case of requiring care for the minor, it was necessary to pay for her.

After that refusal and since her husband changed jobs, they arrived at Insabi and requested attention at Federico Gómez. Again, they performed studies on the minor to validate the disease and, together with cardiomyopathy, they detected hip dysplasia; as a consequence, Marichuy needs rehabilitation.

“In the children’s hospital they treat us well, but they give very spaced consultations. It took us four months to open the file; After they confirmed the diagnosis, they gave us an appointment eight months later and they sent us to genetic care, but to find out if my daughter’s condition is due to genetics, not because there is going to be a treatment.

“We are still waiting for a consultation at the Institute of Cardiology; For a heart transplant, at Federico Gómez they told me that I had to enter the waiting list, and there is a lack of altruistic donation, so it is more complicated. What they were going to do is send her medicines so that she grows as well as possible and in a moment, when she can be a candidate, see the option ”.

To date, Marichuy requires 12 medications to treat his heart failure: captopril, levocarnitine, spironolactone, digoxin, furosemide, aspirin, carvedilol, omega-3, trivisol, ferinsol, selenium, and coenzyme coq10, the latter is not available in Mexico.

“They are very specific medications, in addition, my daughter has severe malnutrition because her heart is as if it were racing all the time. We got a special milk that they don’t sell in the country and it costs us 1,200 pesos. Right now they made a donation to us from Canada, but we have to pay the shipping. The coenzyme must be brand specific, because it is the only one that does not have antioxidants and other substances that could harm my daughter, and the selenium is depleted, “he says.

Another problem is that the drugs must be dosed for Marichuy’s age, so it is to pay the cost of the drug and the dosage. At this point, the minor’s parents ask Insabi to support them with this process.

The mother highlights that the gratuity in Insabi has allowed her daughter to have health care; however, the lack of medication is constant.

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