“World is crashing in. She is bad. She is being intubated. Bad. All docs are with her. Lord, help her. Please. Please. Please. I’m so scared.” - excerpt from Jennifer Parker’s CaringBridge journal
Jennifer and Andy Parker have lost count of how many times their daughter has faced death. Hope’s five years of life have been filled with dramatic ups and downs. Today is one of the high points.
“I never would have guessed we’d be here,” says Jennifer as she watches her rosy-cheeked daughter dart across a playground in their hometown of Greenwood. “We’re in the bonus round. This is wonderful.”
In the most basic terms, Hope was born with half a heart. Andy, an anesthesiologist, was devastated when he heard about his baby’s prenatal diagnosis of hypoplastic left heart syndrome. “25 years ago when I was involved in these kids’ care, the outcome was different.” He explains that during his residency he learned many children with this diagnosis did not survive more than a few weeks.
The Parkers were reassured that because of improved surgical procedures and the availability of the ECMO infant life support system, babies with this heart defect do much better today. Although they felt positive about Riley Hospital for Children at IU Health - where three of their other children had previously received treatment - they decided to investigate heart teams throughout the country to make sure Riley was the best choice for Hope’s surgeries.
Hope was only one week old when Riley heart surgeon Mark Turrentine, M.D., performed the Norwood procedure to begin correcting her heart defect. It was the first of four open-heart surgeries Hope would eventually undergo. “It’s the humdinger of all heart surgeries. It was very scary,” explains Jennifer. Hope fell within the 10-15% of babies with hypoplastic left heart syndrome who don’t do well during surgery, so she was placed on ECMO for three days. When she was finally released, her parents created a makeshift intensive care unit in their home with an oxygen tank and 24-hour nursing care.
Over the next five years Hope faced a total of 17 surgeries and countless unusual twists and turns. “We joke that if there is someone who’s going to have the complication, it’s going to be Hope,” explains Riley cardiologist Anne Farrell, M.D. “She never seems to catch a break, but she keeps on rolling.” A stroke after an operation has left Hope unable to speak, so she communicates through hand signs and sounds. She takes 30 doses of medicine each day to stay alive. She is still fed through a g-tube. And during a procedure to investigate her digestive problems, Hope faced her most unexpected and terrifying
complication to date.
January 27, 2010
“Andy and I are completely numb. She tried to die this afternoon. We hit rock bottom. She is on 100% oxygen. This is so surreal. We love you, Hopey. Please come back to us. We really miss you.” -excerpt from Jennifer Parker’s CaringBridge journal
“Her electrolytes were significantly abnormal and she went into florid heart failure,” recalls Dr. Farrell. “She became very swollen and looked as bad as she had after any of her
previous surgeries. It was a miracle that we got her back from that.”
But as she has done time and time again, Hope rebounded under the expert care of Riley’s cardiology team. “We could not be happier that we’ve been at Riley,” says Jennifer. “These doctors have been our heroes. They get flowers every year for her birthday.”
To the medical team, the Parkers are also heroes. They display grace and strength in the face of tremendous challenges. Their vigilance while caring for Hope between surgeries inspired a home monitoring program that’s being shared with children’s hospitals nationwide. “That is a huge reason why she survived,” says Dr. Farrell. “We looked at them and said, ‘Why don’t we give everyone that advantage?’”
“We don’t know what the future holds for Hope, but we do know that she has been an incredible blessing.”
-excerpt from Jennifer Parker’s CaringBridge journal
The Parkers have made it their mission to soak up every joyful experience with Hope, from trips to the beach, to carrying her in the Indianapolis 500 Festival Mini-Marathon on their backs.
When asked what she would say to other Riley families facing a difficult diagnosis, Jennifer casts an incredulous smile toward her daughter.
“There is Hope,” Jennifer says, shaking her head slowly.
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