ALBUQUERQUE, N.M. — The family of 5-year-old Nathan Fuentes takes joy in the smallest things he does.
Throwing a basketball. Responding to their questions. Eating solid foods. Staying awake most of the day. Attending kindergarten.
Fuentes had his first heart surgery when he was only two months old and the second in May 2017 when he was 4.
Fuentes was born with Recombinant 8 syndrome, a genetic disease found only in New Mexico and southern Colorado that affects development. The disease, according to Presbyterian pediatric Heart Surgeon William Stein, leads to the same congenital heart defect known as Tetralogy of Fallot. Patients with this condition have holes in their heart and an obstruction from their heart to their lungs. Stein performed Fuentes’ second surgery, which entailed putting in a pulmonary valve to improve blood flow to the lungs. As he gets older and his heart grows, Stein said the valve will start to leak and he will need another operation.
Stein said that since his surgery, Fuentes has become more talkative, although his language is limited, he eats more and is more energetic. Nathan mostly communicates to the family with sign language, but does know a few words and will make babbling noises to indicate he is following a conversation. Fuentes’ mother Jayme said that before the surgery, he took a lot of naps, but the youngster was able to start an all-day kindergarten program this year at a private school.
Jayme Fuentes knew before getting pregnant that she was a carrier for the disease. She learned this information during an earlier pregnancy that ended in a miscarriage at 14 weeks. When she was 20 weeks pregnant with Nathan, doctors confirmed he had Recombinant 8 after an ultrasound revealed three holes in his heart. Jayme Fuentes and her husband Thomas, who is an Albuquerque Police Department officer, educated themselves on the condition as much as they could. Nathan spent four months in the hospital after his first surgery. That’s when the family leaned on the nurses, doctors and other specialists to get through.
“It was a little rough, but the nurses and the resources we had there were amazing,” Jayme Fuentes said. “I got to learn about his care and see what the doctors and nurses did.”
Thomas Fuentes said a silver lining of spending so much time in the hospital was meeting other families going through the same thing. The Fuenteses have spoken to other families who are ahead of them in the process, seeking their advice or tips. The couple also had two more boys, who are now 3 and 8 months. Jayme Fuentes is a preschool teacher, which she said gives her the flexibility to care for all three of her children while still working
Each year, the hospital holds a reunion picnic for former pediatric heart patients and their families. Jayme and Thomas Fuentes planned to attend last weekend, the fifth time they have made the event.
“We have met other families,” Thomas said. “They really help you understand things. You meet these other parents who have been through it.”