We all have things to be grateful for. If we are lucky, there will be many points in our lives when we will feel gratitude. Any parent with a child in Boston Children’s Hospital can understand that there have been days when we were grateful just for a healthy baby. On days that wasn’t true, we remember praying for a guardian angel who could help our son. Late in the summer of 2017, our prayers were answered when we met Dr. Jamie Heath, a neurologist from Boston Children’s, who diagnosed his rare medical condition and rescued him with a novel treatment approach. Today our son is a healthy toddler and we owe much of that to Dr. Heath. Not only did she give us the best gift, she inspired us to give back.
After our son was born in the spring of 2017, he began his life in the Neonatal Intensive Care Unit (NICU) at Baystate Children’s Hospital in western Massachusetts. We were certainly no strangers to the hospital after that, but we had hoped it was behind us. Just before our baby turned 3 months old, an emergency brought us to his pediatrician who promptly sent us by ambulance to the Baystate emergency room. We knew it was a serious situation when they brought in a priest and the room cleared out as he prayed over our sweet baby; blessing him as he spoke of eternal life. We began weeks of emergency room visits, serious medical interventions, rounds of tests, a few stays in the Pediatric Intensive Care Unit (PICU) and still had no definitive answers on our son’s illness. We prayed and begged. We struggled as we encountered doctor after doctor without answers or a trajectory for treatment.
Meeting our guardian angel
One Sunday afternoon, Dr. Heath walked into our hospital room. She was visiting from Boston Children’s and she asked new questions that had never been asked before. Suddenly the pieces began to come together. Even from the early stages of her medical analysis, it felt like we could breathe again just from having a doctor of her caliber working on his case. Days later, at his first consultation at Boston Children’s, we literally put our son in her hands for an emergency intervention during this visit. At that moment we completely entrusted her with the care of our child.
There was no precedent for his diagnosis in a baby at such a young age. The medication for his treatment had to be specially formulated, and we were repeatedly told that we couldn’t be sure it would help. The unknown felt heavier than actually having a diagnosis, research and treatment. So, we embarked on a road to pioneer his treatment alongside Dr. Heath, who trusted us immensely and gave us support and consideration as true members of our son’s medical care team. When the first treatment wasn’t effective, she continued to work to find a treatment, and together we identified a treatment that was ultimately successful.
As parents, we became incredible advocates for our baby, never ceasing to push forward for his well-being. When you are at Boston Children’s, you are a part of care in which the whole family participates. Dr. Heath displayed the highest standard of comprehensive medical care parents could wish for their child. Day and night, on-call and off, in clinic and at home, Dr. Heath guided our family in our greatest time of need. She worked on his case tirelessly for months with other great minds in her department and even collaborated with outside institutions to look for any stone left unturned. The fact that Dr. Heath actively included us in our son’s medical care ultimately saved him and paved the way for us to discover a cure.
Over the next few months, Dr. Heath oversaw his specialized treatment that allowed us to satellite his care at Baystate since we live so far from Boston. She encouraged us to use resources we needed to care for him at home as much as possible, rather than spending extended time in the hospital. Dr. Heath would regularly speak with his in-home nurses, collaborate with physicians from the PICU, and orchestrate care during emergency situations. Just before Christmas of last year, our son was medication-free and we were blessed to celebrate our baby’s first healthy Christmas. He has been healthy ever since. Dr. Heath is truly our guardian angel.
Paying it forward
We were so grateful for all of the special care we received from Dr. Heath and her team that we were inspired to give back to both Boston Children’s and Baystate through our family’s endeavor known as Brady’s Vehicles for Change. In honor of Dr. Heath, and with our son’s spirit in mind, this past summer we donated two push cars to the Neuroscience Inpatient Unit at Boston Children’s. The cars allow children to benefit from being more mobile during their hospital stay.
These days we find ourselves grateful for so much more than just our health. We are always grateful for our amazing child, who fought so hard and continues to thrive each day. Through his fight, our son has taught us this: From every challenge you can grow and choose to make great change from what you experienced. If you are able to see the guardian angels who walk into your life, take the time to honor them. And if one day you feel so inclined, please also take time to find a way that you can share your story with compassion and perhaps you will inspire others to join you along the way. We are pleased to hear stories of children who have benefitted from our philanthropic endeavors. In the end, showing our gratitude to those who helped heal our son’s body was the best thing we could do to heal all of our hearts.
— Amy and Dennis R., proud parents of 1-year-old boy