patient Ben and mom, Alison holding hands and smiling in a field

Mighty Blog

Finding courage and heart: Ben’s story

By Alison Barrick, Children’s Minnesota mom

ben-story-5If there is one common thread that unifies many of the heart families I know, it’s that we can all clearly identify that moment in our lives when absolutely everything changed.

For most of us, it is a moment seared into our memories that we can definitively point to and say, “There; that is when my life became something I never thought it would be.” Along our family’s heart journey so far – which has included three open heart surgeries, two heart catheterizations and countless doctors appointments – we have had many pivotal moments. But no date has ever more clearly marked an ending and a new beginning for us than February 10, 2010.

We arrived for our Level II ultrasound in high spirits that day. I remember it was a very cold but sunny day. I ate a bagel in the waiting room, chatting with my husband, Grant, about potential baby names and plans for the nursery. Those are my last memories of my life “before.”

ben-story-1We’ve come to learn that our story from that point on unfolded the way it has for many others in our situation – casual banter with the doctor that gave way to an awkward silence and a long assessment of a little heart that didn’t look quite right. They finally told us that they believed our twin Baby B had a serious and rare heart defect called Hypoplastic Left Heart Syndrome (HLHS). With this defect, a number of issues cause the left ventricle of the heart to be underdeveloped. This condition is generally not lethal in utero, as the baby gets all of his oxygenated blood via the placenta. The problems start after birth when the heart becomes singularly responsible for pumping oxygenated blood to the body. Without surgical intervention, this disease is lethal, generally within the first month of life. We endured the rest of our appointment in a total daze before returning home and beginning to research everything we could about our baby’s condition.

Everything I remember about the first days of our “after” is rooted in how overwhelmed and terrified we were by what we found on the Internet. We tried to find what current and hopeful information we could about how best to prepare for a baby who would have the significant needs that ours would. Only one common message emerged from all of the research – it matters where you decide to take your child for surgery. And surgery is only part of it – mile one of the marathon, as it were. Before, during, and after surgery, you want to make sure your child is in the very best hands, ones that are experienced, proven, and able to handle any number of surgical and post-surgical issues. We decided we were ultimately looking for a hospital that not only handled a large volume of complex pediatric cardiovascular surgical cases, but also had the best post-operative setting.

After consultations with two top East Coast children’s hospitals, our choice was clear – we wanted Ben to be cared for close to home, at Children’s Minnesota. What ultimately made the decision for us was the foundational trust and respect we built with the providers at Children’s right from the start.

The Children’s Heart Clinic and Children’s neonatal intensive care unit (NICU) teams were generous with their time, gave us tours of the state-of-the-art Cardiovascular Care Center (CVCC) and NICU, helped us build our birth plan and provided insights about what commonly happens during hospitalization following surgery. They were responsive to all of our questions, and dug into finding the right answers for us. Children’s integrated network of providers ultimately empowered our family in a situation where we felt like virtually everything was out of control – we knew we would have the tools and support to provide for our son’s needs.

Ben has had all of his procedures and follow-up care at Children’s Minnesota, and Grant and I often remark that the focus on total family care is what has enabled our family to emerge from each experience successfully. This will be a lifelong road for us to navigate due to the complexity of Ben’s condition. But, ever since his final planned surgery, our focus has happily been on giving Ben and his brother, Sam, as “ordinary” a life as possible despite the extraordinary circumstances into which they were born.

Today, Ben is an extremely active 6-year-old who loves to keep Grant and I on our toes. We often joke that he is the most active member of our family, and rightly so. Ben is on a minor medication regimen including a blood pressure pill along with a small dose of aspirin to avoid clotting. Although there are many unknowns that lie ahead of us in our unexpected detour in this life, our amazing partners at Children’s have given us the resources and confidence we need to remain positive and hopeful in our roles as parents and advocates for both our sons.

If you would like to support Children’s and families like Ben’s, you can make donation online. Your support will provide services like the Ronald McDonald House, which allowed Ben’s family to spend time together as a family for an entire weekend; the Child Life experts, who helped Ben and Sam understand what was happening to Ben’s heart; and the Family Resource Center that assisted Alison and Grant in finding out more about what was happening to their son.



Rachel Patterson