In 2006, I was expecting my first child. At the 18 week ultrasound, we were blindsided to learn our son had a complex congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Survival required at best 3 open heart surgeries within the first 2 years of life and most likely a total heart transplant later.
Isaac was born on February 25, 2007, at UNC Children’s Hospital. From the moment he was born, he was in distress. An hour after his birth, the NICU attending told us more devastating news – our sweet boy had arrived with additional physical anomalies and could not breathe on his own.
Isaac spent 110 days in UNC’s Neonatal and Pediatric ICUs, undergoing open heart surgery at 3 days old and 4 additional operations by his 10th week of life. With each passing week, more problems arose. On 3 separate occasions, clinical staff told us all vital signs indicated impending death. We spent many sleepless nights holding our dying son, vigilantly watching his every breath as we anticipated it to be his last. Thankfully, miraculously, Isaac survived those awful episodes at death’s door.
At 18 weeks old, he was discharged home with 24-hr in home nursing care, dependent on his trach, vent, and feeding tube. The next 6 weeks had us back & forth between hospital & home, the last admission caused by seizures. There we learned Isaac’s heart was no longer growing but becoming thick from strain. He no longer had the anatomy necessary to survive the next open-heart surgery nor a transplant. My son was out of options.
On August 5, 2007, Isaac died in my arms.
While grief hung heavy around my heart, I realized the precious gift UNC’s clinical team had given me. They had valued a scared mom across a hospital bed and engaged me in Isaac’s care. They welcomed me to morning rounds, following up later to discuss my questions or concerns. They invested time explaining medical terms and educated me on the daily PICU processes. Through them, I became an expert in my son’s many health challenges and an involved member in his care team. UNC’s PICU did not merely treat my broken boy’s medical problems; they cared for my family. My concerns were heard, my questions answered, my perspective valued and honored. In doing so, they bestowed a gift I could never repay: the priceless ability to bury my son without regrets, knowing without a doubt that absolutely everything possible had been done for him.
Over the next 7 years, I volunteered as a PICU Family Advisor. My involvement began with small projects such as implementing sleep chairs in every PICU room and creating a Parking and Meal Voucher program for nurses to meet perceived needs of families. I joined the PICU’s multidisciplinary Partners for Improving Quality and Measuring for Excellence team (PIQME), a monthly committee that collaborated to improve hospital-acquired infections on the unit. I collaborated in a Lean Six Sigma Green Belt certification project to improve daily communication on the PICU between clinicians and families. We successfully improved daily documented communication from 14% to 66%. I subsequently presented this project at the International Conference for Patient- and Family- Centered Care and in the American Journal for Medical Quality. I also co-founded the NC Children’s Hospital Family Advisory Board, leading the group’s formative years. UNC’s Institute for Healthcare Quality Improvement brought me on as faculty to train residents in partnership with patients and families in QI and care.
A UNC colleague spotted a job opening at the American Board of Pediatrics and encouraged me to apply. Everything I had learned through Isaac had equipped me for the position. Now ABP staff, I engage physicians and families at a national scale while remaining present in my children’s lives. I coach physicians to gain necessary maintenance of certificate credit for meaningful QI work, review QI projects, and lead national conference sessions on patient advocacy.
God has masterfully used the difficulties of Isaac’s diagnosis and death to equip me to provide for my children and improve care for others! I am forever grateful for my beautiful, broken son. That precious blue-eyed, ginger boy turned my pity into compassion, my fears into strengths, my tears into joy, my loss to others’ gain. His broken heart grew mine tenfold.
Patience’s story is another submission that showcases the power and strength of mothers as they fight for their children and families. We thank her for sharing her journey with us for #PVImpact17.