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Family Moves Hundreds of Miles for Heart Care

Abigail Young spent the first eight months of her life in the hospital with heart problems. Now 2, Abigail needed so much medical help that her family moved from West Virginia to St. Louis so they could all be together.

She was born with:

  • Long gap esophageal atresia, in which the esophagus (swallowing tube) that connects the throat to the stomach does not form properly
  • Tracheoesophageal fistula, where the esophagus and trachea (windpipe) form an abnormal connection, causing breathing and swallowing problems 
  • Complete AV Canal defect, a hole in the heart resulting in blood circulation problems 
  • Down syndrome, a birth defect resulting in low muscle tone and developmental delays

“She is a happy, active toddler who brings joy to our lives and to everyone with whom she comes into contact,”Abigail Young, 2, far left, and her family says Abigail’s mother, Karen Young. “She is a fighter and has overcome so much.  She teaches all of us about determination and finding joy in the midst of extraordinarily difficult circumstances.  While her medical difficulties were unexpected and have created a lot of change, we are so grateful that God added her to our family.”

The family lived in West Virginia when Abigail was born in September 2011. Her father, Frederick, worked part-time for the West Virginia Air National Guard and full-time as an airline pilot.

The complexity of Abigail’s medical needs meant the family had to find a leading children’s hospital out of state that could provide highly specialized care. For the first three months of Abigail’s life, that was in Cincinnati – about 300 miles away. Frederick took leave to be with her there.

When his medical leave was about to end and he needed to return to work, the Youngs wanted to keep the family together in one location. Frederick secured an Air National Guard position at Scott Air Force Base near St. Louis. After Abigail was transferred to another nationally ranked facility, St. Louis Children’s Hospital, the family moved to a new home near the base.

Abigail came home a week before her eighth month of life and stayed home until a hospitalization in September that lasted about a month. During that time doctors implanted an artificial valve and pacemaker to help her heart function.

“Despite the complexity of her medical case, Abigail responded quite positively to her treatment and made great progress in a short period of time," says Sirine Baltagi, MD, Critical Care Medicine.

“I cared for Abigail in the Cardiac ICU and just adored her and her family,” says Ashley Brooks, a nurse. “What an inspiring little girl. She was a pleasure to care for, and her family were real troopers.”

“The strength that the family showed throughout her hospitalization was inspirational,” says Betty Lu, Cardiac ICU nurse. “Karen and Frederick were always at her bedside, yet somehow managed to find time for their other children. Immediately after her surgery, there were a few days when Abby was very sick and it was stressful time for the family, yet they were always positive. They reminded me of why I wanted to be a cardiac ICU nurse.”

Karen Young says she’s been pleased with the care Abigail has received from St. Louis Children’s Hospital and inspired by everyone’s compassion and generosity.

Abigail Young during hospitalization“While we miss having family nearby, totally believe it was worth the move,” she says. “We cannot ignore the challenges that come with medical issues, but the little positives go a long way toward encouraging us. There are so many ways that people help and encourage those with children in the hospital – donating toys, volunteering time or giving experiences such as one that we as a family recently enjoyed at a St. Louis Rams game.  These things make such a big difference and truly help and encourage those going through a hard time.  

“Thank you to all who have helped our family or are helping other families in similar circumstances. To the doctors who seem to work miracles every day, to the nurses and techs who patiently care for us and encourage us, to the volunteers who give of their time and donations, to those who offer smiles and encouragement, and everyone else who helps … you are making a difference, and we so appreciate you. Thank you!”

 

Heart Center