Editor’s Note: Patient Worthy is proud to share this caregiver story from our friends at Courageous Parents. — A parent’s perspective by Maria Hopfgarten, Courageous Parent Network Parent Champion.
When you bring your typically developing child to the pediatrician, you quickly come to expect a certain rhythm to the visits. The doctor may mention upcoming developmental milestones, caution you about toddler tantrums, or suggest babyproofing before your little one starts crawling. These aren’t just casual tips—they’re examples of anticipatory guidance, a standard and essential part of pediatric care. It’s the way clinicians help families look ahead and prepare for what’s likely to come.
But when your child has complex medical needs, these conversations too often fall away. The focus shifts to the present—managing symptoms, coordinating care, reacting to what’s urgent. And in that shift, anticipatory guidance can be lost, leaving families without the roadmap they desperately need. The consequences can be painful and lasting.
My son Jacob lived with mitochondrial disease for ten beautiful years. Though he couldn’t speak or walk, his radiant smile spoke volumes. Like many medically complex children, his care involved routines that became second nature to us. One afternoon, after a routine appointment, I lifted a 6-year-old Jacob into his car seat just like I had hundreds of times before. Nothing seemed unusual. Later that evening, while preparing him for his bath, I noticed his arm was swollen and discolored. He didn’t express pain—something not uncommon for him—but I knew something was wrong.
At the ER, we were given devastating news: Jacob’s arm was broken. Worse still, because the injury happened at home with no clear cause, child protective services were required to get involved. I was consumed by guilt. How had I failed to protect my son?
When the ER doctor returned after speaking with Jacob’s primary physician, he told us Jacob had osteoporosis, a known complication of mitochondrial disease. This was the first time anyone had mentioned this risk to us. That one missing piece of anticipatory guidance could have changed everything.
If we had known Jacob’s bones were fragile, we could have discussed bone health strategies and screening with his team, modified our transfer methods and adjusted our daily care routines to reduce risk. Most importantly, I would have known that his fracture wasn’t the result of negligence. It was a known possibility—one we just weren’t informed about.
Anticipatory guidance is not about predicting every outcome or preventing every complication. It’s about preparing families—medically, practically, and emotionally—for the road ahead. When clinicians share not only what is happening now, but also what may come, families are empowered to make thoughtful, proactive choices. And when challenges do arise, that preparation helps us meet them with clarity.
At Courageous Parents Network, we believe every family—regardless of diagnosis—deserves this level of care. Anticipatory guidance should not stop at milestones or medications. It must extend to the real-life experiences of caregiving: the physical lifts, the emotional weight, the decisions that shape each day. These conversations can be hard. They require time, empathy, and trust. But when we talk openly about what may lie ahead, knowledge can replace anxiety, and preparation can ease the burden of the unknown.
