May 19, 2022 – When you speak to Santiaga Nunez, right away, you can sense her deep and unwavering devotion to her son, Lloyd Tyler Rochez, born in 2002 with trisomy 13, a genetic disorder that can involve severe learning problems and health woes that affect nearly every organ.
Lloyd’s diagnosis was confirmed shortly after he was born, when his doctors noticed that his facial features weren’t measuring right for a baby of his size, he had an extra finger on his left hand, and his fingers were joined on the right. His heart was also on the right side of his chest instead of the left. When he had breathing issues, he was quickly rushed to the neonatal ICU (NICU) in the New York City hospital where he was born.
Nunez wasn’t sure exactly what was wrong with her newbornbut the next morning, a genetics expert came to her room to discuss her medical history and whether anyone in the family had Down syndrome. That same health care provider told her that the next step was to run some tests and do more bloodwork.
Four days later, when Nunez was told that Lloyd had trisomy 13 and was likely to live for only 2 weeks, she was unable to come to terms with the news.
“There was so much information being told to me at once,” recalls Nunez, now 42, who is also the mom 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 remember her doctor telling her something about faith.
“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, home as a case manager for unaccompanied minors coming to the US, decided that she would commit to providing the best possible care for her new baby no matter how long she lived .
Thus began an incredible story of Lloyd defying all the odds. While he stayed in the hospital for 2 weeks, his breathing soon began to stabilize and he could eat by mouth. With that, he was discharged and allowed to go home.
“I was this inexperienced first-time mom who had been told to watch for all sorts of things, like making sure she 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 old, Nunez made another important choice.
“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 health complications still came about, including a serious intestine issue at 8 months, at which point Lloyd’s doctors suggested waiting until he was a year old to have surgery.
Lloyd was able to get through the procedure but, while he was in the recovery room, he stopped breathing.
“I started screaming ‘my son is dying,'” Nunez recalls. “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 soon learned that Lloyd had had a seizure. He spent the next 3 weeks in 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 kept the faith, and since then, Lloyd’s health has mostly stabilized. Nunez can care for him at home on her own and with family members who help out from time to time.
And, while Lloyd is unable to speak, he smiles and laughs when he’s happy, he’s quiet when he feels ill, and, when he wants to be alone, he groans, Nunez says. He can stand up, and he crawls from place to place. He also can’t go to the bathroom on his own and is fed by a gastrostomy tube, or G-tube.
In December, when Lloyd was diagnosed with COVID-19, Nunez started worrying all 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 once again defied the odds against him and came home again. He has since faced yet another health challenge: He recently 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 support group or speak with a mental health professional about all that she’s juggling, she says she draws strength 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 also draws comfort 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 end, Nunez hopes her story inspires others to think beyond 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. ”