Man With Trisomy 13 to Celebrate twentieth Birthday

May 19, 2022 – When you converse to Santiaga Nunez, immediately, you’ll be able to sense her deep and unwavering devotion to her son, Lloyd Tyler Rochez, born on July 13, 2002 with trisomy 13, a genetic dysfunction that may contain extreme studying issues and well being woes that have an effect on practically each organ.

Lloyd’s prognosis was confirmed shortly after he was born, when his medical doctors observed that his facial options weren’t measuring proper for a child of his dimension, he had an additional finger on his left hand, and his fingers had been joined on the appropriate. His coronary heart was additionally on the appropriate aspect of his chest as an alternative of the left. When he had respiratory points, he was rapidly rushed to the neonatal ICU (NICU) within the New York City hospital the place he was born.

Nunez wasn’t positive precisely what was fallacious along with her new child, however the subsequent morning, a genetics knowledgeable got here to her room to debate her medical historical past and whether or not anybody within the household had Down syndrome. That similar well being care supplier advised her that the subsequent step was to run some exams and do extra bloodwork.

Four days later, when Nunez was advised that Lloyd had trisomy 13 and was prone to stay for under 2 weeks, she was unable to come back to phrases with the information.

“There was so much information being told to me at once,” recollects Nunez, now 42, who can be the mother of two daughters, ages 8 and 10. “I had just turned 22, and this was my first experience giving birth. I can’t even remember everything the doctors told me.”

But she does keep in mind her physician telling her one thing about religion.

“After he tried to explain trisomy 13 to me, the downside and the prognosis, at the end he said, ‘I don’t know if you believe in some supernatural being, but if you want to ask that someone for a miracle, I would advise you to do that. Pray for your miracle, and you may get it.’”

Prepared for the worst, Nunez, who now works from her Martinsburg, WV, house as a case supervisor for unaccompanied minors coming to the U.S., determined that she would decide to offering the absolute best take care of her new child regardless of how lengthy he lived.

Thus started an unimaginable story of Lloyd defying all the percentages. While he stayed within the hospital for two weeks, his respiratory quickly started to stabilize and he might eat by mouth. With that, he was discharged and allowed to go house.

“I was this inexperienced first-time mom who had been told to watch for all sorts of things, like making sure he didn’t turn blue at night,” she says. “I spent so many sleepless nights, but I was dedicated to Lloyd.”

Then, when Lloyd was 6 months previous, Nunez made one other vital selection.

“I decided that I wasn’t going to live each day as if he was going to die,” she says. “I decided, instead, to enjoy him every day.”

But many well being problems nonetheless took place, together with a critical gut challenge at 8 months, at which level Lloyd’s medical doctors prompt ready till he was a 12 months previous to have surgical procedure.

Lloyd was in a position to get by way of the process however, whereas he was within the restoration room, he stopped respiratory.

“I started screaming ‘my son is dying,’” Nunez recollects. “The nurses put me in a room, and I think I was in there for 10 minutes, but it felt like an eternity of me screaming.”
She quickly realized that Lloyd had had a seizure. He spent the subsequent 3 weeks within the hospital.

“That was our life,” she says. “He would have respiratory pneumonia, for example, and we would go back to the hospital. We were in and out and in and out.”

But she saved the religion, and since then, Lloyd’s well being has principally stabilized. Nunez can take care of him at house on her personal and with relations who assist out sometimes.

And, whereas Lloyd is unable to talk, he smiles and laughs when he’s completely satisfied, he’s quiet when he feels in poor health, and, when he desires to be alone, he groans, Nunez says. He can arise, and he crawls from place to put. He can also’t go to the toilet on his personal and is fed by a gastrostomy tube, or G-tube.

In December, when Lloyd was identified with COVID-19, Nunez began worrying over again.

“Seeing him in the ICU, all I could think of was ‘please don’t make my son suffer,’” she says. “If he goes, I want him to go in peace, and I don’t want to see him in a machine and suffering.”

But Lloyd as soon as once more defied the percentages towards him and got here house once more. He has since confronted one more well being problem: He just lately had a pelvic fracture.

“When I saw the orthopedist, he told me that Lloyd has a bone deficiency and that his bones don’t have enough room to grow,” she says. “I’m afraid this will be the beginning of a new journey.”

How This Mom Finds Strength

While Nunez doesn’t go to a assist group or converse with a psychological well being skilled about all that she’s juggling, she says she attracts power from Lloyd himself.

“I’m very private and I come from a culture where you don’t want people feeling sorry for you,” she says. “But I want to give Lloyd everything – he goes to school, we go to church, he had a quinceañera when he was 15, we’ve been to Disney, and we’ve both gotten on a roller coaster. I haven’t limited his life.”

She additionally attracts consolation from her daughters.

“Everyone calls him ‘Baby Lloyd,’” she says. “My girls come right home from school, wash their hands, and throw themselves on his bed and watch TV with him. They also worry about him a lot. When he goes to the hospital, they suffer more than I do.”

In the tip, Nunez hopes her story evokes others to assume past a prognosis.

“Don’t lose hope,” she says. “I want people to feel hopeful when they read about Lloyd. He’s going to be 20 years old, and no one ever believed he would be here today … I feel blessed.”