Diego and Mariana, Growing Together in Cuba
By Laura Gomez
HAVANA TIMES – Talking about childhood illnesses is always emotional, especially in contexts of scarcity and distress in a country like Cuba. We often see pleas for help on social media to obtain essential medications or treatments abroad.
Nine years ago, Mariana Cruz’s life took a turn. While she doesn’t face harsh economic difficulties, her day-to-day is a battle for hope.
Mariana Cruz: I would have liked to study medicine; it was a distant dream. I studied until tenth grade, worked at a funeral home, then went to Varadero to take care of a sick relative, and they paid me a salary for that. Life in a rural town is not easy. I always said that if I got pregnant, I would have the baby. Hearing the confirmation of the pregnancy from the doctor was very exciting. Feeling him grow inside me forged an indestructible bond. I experienced nausea, back pain, drowsiness, swollen feet, but also felt happiness, anxiety, fears. I am a blessed woman, especially because I had the support of my parents. I have beautiful memories of those nine months.
HT: Did you undergo all the tests performed during pregnancy?
MC: Of course, I believe that undergoing tests during the gestation process is an act of commitment and responsibility to your baby, even the risky ones, like the needle test.
HT: You mean amniocentesis; I’ve heard it can be a dangerous test.
MC: Yes, although at that moment, I only cared about knowing if my son would be a healthy boy. Later, I learned that during this test, some pregnancies are terminated due to spontaneous abortions. Anyway, I wouldn’t have hesitated to do it because it guarantees his health. I was impatient during the wait for the results, and I remember a neighbor telling me that it was a very reliable test. However, it came back negative; there were no genetic abnormalities.
HT: How was the childbirth?
MC: It was a complicated cesarean at nine months. The cervix did not dilate enough, and the epidural did not work; they administered general anesthesia. The child was born cyanotic, didn’t cry at birth. Then the doctors treated him for 16 days with antibiotics due to sepsis.
HT: Finally, what was the diagnosis given to the child at birth?
MC: Y chromosome inversion. It’s a rare genetic disorder. At that time, I knew nothing about chromosomal abnormalities, and since the needle test result showed nothing wrong, I wasn’t concerned. It was tough to accept that the child had problems. My mother gave me a lot of support, but the most important thing is that I was prepared to have him, take care of him, and educate him. I started treating him at a neurodevelopment center in Cárdenas (in the province of Matanzas), and eventually, they referred me to the Juan Manuel Márquez Pediatric Hospital in Havana. In the capital, there are more options; I had to struggle hard with transportation every time I had an appointment. After several studies, they determined that he could have autism and global developmental and behavioral disabilities. In that same period, I contacted a genetics specialist; they took a blood sample to send to the Russian Institute of Genetics, but the process couldn’t be completed because the contract between Russia and Cuba closed; or at least, that’s what they told me.
HT: But there were more complications later, right?
MC: At two months, he had another severe sepsis associated with public health services. He was constantly admitted, and hospitals always have risks. They administered a last-generation antibiotic that saved his life but caused his intestinal flora to reverse. At seven months, he began to lose weight, urinating frequently. In the hospital, they performed a glucose test, and he was diagnosed with Type 1 Diabetes Mellitus. Since then, I apply slow and simple insulin four times a day; that’s for life.
HT: Tell me about Diego’s peculiarities and what a day in his life is like.
MC: Diego doesn’t speak, lacks concentration, doesn’t eat by himself, has hypersalivation (commonly known as drooling). Doctors always emphasize that he has to stay away from crowds and noise. I am attentive to him all the time; of course, I can’t leave his side. He is a very docile child, likes to play with balls even though he has toys to choose from, likes to watch dolls. He gets upset if he has to interrupt the game because it’s time to eat or for any other reason. I have to be very careful because if I call his attention, he cries a lot. Generally, he is very affectionate. In the afternoons, I take him for a walk. Everyone in the neighborhood knows him and calls him by his name. Now he is nine years old and has not developed language.
HT: Doesn’t the child receive specialized attention from the Ministry of Education?
MC: Yes, he is attended by a teacher who comes to the house and does activities with him, such as guessing pairs, coloring, throwing or catching the ball, among many things. She is a good teacher.
HT: How do you manage to meet his needs in this critical moment we are experiencing in Cuba.
MC: Thanks to my close family and those living abroad, without them, I could not have achieved it, much less without the help of my recently deceased mother. Only thanks to them can I buy vegetables, chicken, eggs; I try to always give him a healthy meal. The same goes for allergy medications and those prescribed by the neurologist. If my family didn’t exist, I’m sure it would be very difficult for me to cope with the situation. Children like Diego need even disposable diapers because he has no control over his sphincter. And buying food is already a big effort; diapers would be unattainable not only because of the price but because I would have to chase after them, as they are almost never available.
HT: Besides your family, do you receive assistance from Social Security?
MC: Yes, they pay me to take care of him as a single mother because I can’t work. It’s not much, 2600 pesos (just under 10 USD) a month; it’s helpful. I can’t imagine how mothers in conditions similar to mine do it and only have that money to live on; because many don’t have the support of their relatives.
HT: What would you say to those mothers who have children like Diego?
MC: That I understand them, I know what they are going through. You have to feel a lot of love for them, a lot of faith in God. Not everyone can dedicate their life to a dependent child due to health problems. You have to know how to face life with courage, but that’s what most mothers do; a sick child demands more perseverance. Keep fighting; love gives a lot of strength. I only ask God to give me health, strength, and inner peace to continue contributing to Diego’s development and his quality of life. I hope the future is better for him. Hope is something that mothers never lack, even when conditions are unfavorable.