CDMX, Mexico. – At first glance, Cristian Miguel is a sick child. He has yellow skin; his abdomen has grown disproportionately in size because his liver and spleen have not stopped growing.
When he was 46 days old, the doctors met with his parents and explained that the boy needed a liver transplant to survive. “That was the hardest moment of my life. From then on, the future becomes uncertain, and the fear that you experienced that day never goes away, ”says Patricia López, his mother.
The young mother avoids talking about that constant fear that she has suffered for three years. She doesn’t need to explain it either: fear has been known to paralyze her when she says that she doesn’t look for information on the internet about her son’s diagnosis. She did it once and she got so bad that she decided to only know the bare essentials. Out of fear, she also doesn’t ask the doctors what the life expectancy is for the little one. She though she really she doesn’t need to be told.
Since he was born, his three-year-old son has suffered from bile duct atresia. This means that the external tubes of the liver, which carry digestive fluid to the small intestine, they do not work. As a consequence, the body cannot break down fats. nor process and expel the waste. If he wants to have a chance to grow, the boy needs a liver transplant as soon as possible.
The wait began in 2020
On January 9, 2020, Cristian Miguel, with less than two months to live at the time, underwent a Kasai’s procedure to correct biliary atresia and connect his small intestine to his liver. This surgery was supposed to improve the child’s quality of life, but it was not successful and led to a much more extreme condition.
With a liver not working as it should, doctors diagnosed the little boy with cirrhosis of the liver, leaving only one path for survival: a transplant.
There began the odyssey of Patricia and Yoel Bencomo (the father). The first thing was to look for a compatible donor since neither of them was. Patricia went to the networks and said that the life of her child depended on another person being willing to have her body cut open and a piece of her liver cut out.
Fortunately, a friend of the couple agreed and preliminary tests confirmed that it was viable. When it seemed that the most complex thing -getting a donor- was already in their hands, then they encountered new problems that have delayed the surgery until today: the child would get sick and they couldn’t perform certain tests, there were a lack of resources in the hospital, they closed the salons during the pandemic. Thus two years passed with a willing donor without their being able to advance further.
Now the surgery is canceled because the country does not have the necessary team of specialists.
In Cuba there is a National Transplant Program which has 32 accredited hospitals for the organ and tissue donation process; Nine of them are kidney transplant centers, three liver, one heart, five bone marrow and 17 cornea. That’s how it works, in theory.
However, at the “William Soler” Pediatric Hospital in Havana, they have assured the family that Cristian cannot receive the organ on which his life depends because there are no doctors to operate on him.
“I have great confidence in them and in their preparation, but I cannot demand what is out of their hands,” Patricia comments about the specialists who have cared for her son for three years.
While they wait for a surgery that does not arrive, the child’s health worsens and admissions become more frequent. On the other hand, the lack of medicines in the country is no less serious for patients in critical condition like Cristian.
“In hospitals right now there is no Ursochol, which is essential because it helps patients to liquefy bile and drain better. There is also no vitamin K, essential for his coagulation problems”, laments the child’s mother.
Patricia and Yoel get these medicines by going, again and again, to social networks and their friends. Sometimes the drugs appear in Havana and they look for someone to get them to Pinar del Río, where they live. Other times the same doctors get them thanks to other patients and save the treatment for Cristian. The child has mostly had access to his medicines out of solidarity, and not because they are available in the country.
Facilitating the food it requires is not easy either. “We have what comes to the store, and my husband is looking for a way to buy him something else. Many people help him and even sell him an extra packet of chicken for the child”, says the young mother.
Why a humanitarian visa?
After two months of hearing that the surgical team was not complete to operate, Patricia and Yoel decided not to wait any longer and find another way to save their son.
“I need help to obtain a humanitarian visa for my three-year-old boy who urgently needs a liver transplant”, published Yoel on his Facebook wall this April 8. Without knowing how to proceed or who to contact, the parents have begun to request the child’s medical history and a certificate that corroborates that they cannot operate on him in Cuba.
“We are desperate because there are not enough medical personnel or resources to perform the operation here and our little one deteriorates more every day. He is a strong, intelligent and very cheerful boy; especially a child who needs an opportunity to live and the support of whoever wants to help him so that he can have a future, ”Yoel wrote.
Patricia confesses that a visa and a medical team in the United States that will operate on him at no cost may be an unattainable goal for them, as they don’t know how to achieve it. She has agreed to tell her family’s story, hoping that perhaps after publishing it, the specialists that her son needs will appear.
“My child andHe began to retain liquids, he has anemia and his gums bleed. We are seeing how every day it deteriorates more and that, when they controlled it for a part, is offset by another. Every day that passes we see how it goes out,” says Patricia from the “Pepe Portilla” Pediatric Hospital in Pinar del Río, where Cristian remains hospitalized.
