Meet Gabriel.
ABCA3 Deficiency
When Gabriel was born, he seemed to have difficulty breathing. Doctors soon discovered his lungs were underdeveloped. After seven weeks of hospitalization, he was diagnosed with ABCA3 deficiency, a rare genetic disorder. ABCA3 deficiency presents itself as respiratory distress that makes the individual more susceptible to respiratory issues and difficulty breathing.
Despite Gabriel’s health conditions, his mom, Gizelle, thought of him as her rainbow baby. After the loss of her infant daughter, Gia, to SIDS, Gabriel’s arrival felt like a step forward in their healing process. According to Gizelle, “Gia’s death was hard to process, but Gabriel became the light at the end of the tunnel.” His medical complexities shifted his family's thought process to “How can we better support Gabriel?”
Gizelle first heard of Coastal Kids Home Care while Gabriel was still in the NICU at Lucile Packard Children’s Hospital Stanford. A nurse practitioner referred them to Coastal Kids during the discharge process. Since then, Gabriel has received monthly palliative care nursing and social work visits. It was not until recently that Gabriel, now age five, also began to shift nursing to relieve some of the caregiving burdens for Gizelle, “Having a shift nurse has provided mental and physical relief. It has allowed me and my husband to give our oldest child Gianni attention.”
Often, caring for a child with medical complexities can lead siblings to believe their needs are not important. With shift nursing, Gizelle can take a break from Gabriel’s care and focus on Gianni too. According to Gizelle, “Support from Coastal Kids Home Care has been tremendous, and they have worked with me to help ensure services and needs are met.” Although non-verbal, Gabriel is a delightful kid. He enjoys flying kites at the park, watching movies, and going for walks with his family. With the support of his Coastal Kids team, he is progressing at his own pace.
“Support from Coastal Kids Home Care has been tremendous, and they have worked with me to help ensure services and needs are met.” - Gabriel’s Mom
