Infant With HLHS Faces Urgent heart Or heart–lung transplant After Vein Occlusion
USA: A 14-month-old infant diagnosed with hypoplastic left heart syndrome (HLHS) now urgently needs a heart or combined heart‑lung transplant after progressive pulmonary vein stenosis led to a complete occlusion of a lower left pulmonary vein. The narrowing was discovered during a recent cardiac catheterization; prior attempts to open the vessel with a stent failed, leaving the child ineligible to continue the standard three‑stage surgical pathway used to manage HLHS.
The infant’s condition was first identified on a 20‑week anatomy scan, and the family endured an extended early hospitalization, spending roughly 8½ months between care in Portland and at Stanford. After the initial palliative procedure that many babies with HLHS receive, the pulmonary vein narrowing worsened, blocking the path to the subsequent staged surgeries that improve blood flow and cardiac function. As a result, clinicians and the family are pursuing transplant options—either an isolated heart transplant or a combined heart and lung transplantation—depending on what specialist centers deem feasible.
Securing a suitable donor organ and a transplant center willing to accept such a small, complex case presents both medical and logistical hurdles. Procuring a size‑appropriate heart or heart‑lung block for an infant is rare, and the financial and practical burdens of multi‑center care amplify the urgency. The family—identified as parents Destiny and Dakota—has already spent more than 200 days in hospital settings and recently celebrated bringing their child home, treasuring each recovered moment while racing against time to locate a transplant center and donor.
The parents and their community have rallied around the child as they navigate referrals and evaluations at potential centers. Their experience underscores the fragile, high‑stakes nature of pediatric transplantation and the lengths families and clinicians must go to secure lifesaving care for the smallest patients.
Video originally published on 2026-01-16 20:34:50
