Tracheostomy care “is a little scary,” says Triana Pena. “But they made me feel really comfortable and not so nervous while I was learning.”
Triana Pena was born at Fountain Valley Regional Hospital and Medical Center. So she and her parents were thrilled when Triana welcomed her son Gabriel there, too. The family quickly had another reason to appreciate the physicians, staff and services at the hospital: Gabriel was born critically ill.
Not breathing at birth, Gabriel had to be resuscitated and then intubated — “a big shock,” the new mother says. He was soon diagnosed with Freeman-Sheldon Syndrome, a rare disorder that affects the joints and muscles of the face, hands and feet. Gabriel’s hands were completely closed, and he had bilateral club feet. But his most immediate problems were the potentially life-threatening respiratory and swallowing complications that are part of the disorder.
The infant’s first few days were critical. Doctors performed a tracheotomy to help him breathe more easily. In the meantime, nurses, respiratory therapists and social workers in the hospital’s Neonatal Intensive Care Unit (NICU) rallied around the family — providing them with information and support.
Gabriel spent a month and a half in the NICU, with the staff helping him and Triana through each new challenge. Chronic respiratory problems made it difficult to feed Gabriel. He later developed pneumonia.
Bringing Gabriel home brought its own anxiety. Triana needed to learn CPR and feel comfortable cleaning, suctioning and changing Gabriel’s “trach” tube. He also came home on a ventilator. Again, Fountain Valley’s NICU team reassured her.
Tracheostomy care “is a little scary,” says Triana. “But they made me feel really comfortable and not so nervous while I was learning” — giving her the confidence to provide Gabriel with the care he needed while also bonding with him as a mother.
Even after his release, Fountain Valley has continued to be the center of Gabriel’s care. When he was 1-year-old, his feet were casted. A “swallow study” when Gabriel was 3 helped doctors identify soft foods that he could eat and that would help him thrive.
Today, “he’s doing really well,” says Triana on Gabriel’s 5th birthday. His health is stable. He’s eating pureed foods and is moving around with ankle orthotics and the help of a walker. Once a week, he receives physical and occupational therapy.
Best of all, Gabriel just started school — just like any other 5-year-old.