Hand to Hold's Official Blog: Written by Parents for Parents

The Sky is the Limit: Breastfeeding a Vent-Dependent NICU baby

While on three-day hospital bed rest with PPROM, I researched what was required to create a breast milk supply under these circumstances: our son was going to be an extremely low birth weight, premature, and sick baby. He would be separated from me at birth, untouchable for days, possibly weeks. I read that pumping within […]

{Friday Feature} Raising a Medically-Complex Child

There are more than 6,000 rare diseases in the world, and approximately 1 in 2,000 people have been diagnosed with one. Every person and/or family affected by rare disease is different in their own way, but we all share the same problem: we are “rare” and often even the medical community doesn’t know what to make of our diagnosis. My 11-year old, Mighty Z, is affected with a rare disease that affects only 800 children worldwide. Her disease does not discriminate on the basis of race, or gender, and it is known by two different names: Ondine’s Curse (its first and oldest name) and Congenital Central Hypoventilation Syndrome or“CCHS” (its modern name). CCHS is a central nervous system disorder in which the autonomic (involuntary) control of breathing is low. For Mighty Z and other CCHS patients, this means that the respiratory response to oxygen and carbon dioxide is sluggish at best during the day; and, it is absent at night, when sick and/or when stressed. [Read more]