Heart patient defied odds and worked in health care

For Susan E. Jones, the best way to deal with a congenital heart defect was to become part of the medical community herself.

Mrs. Jones was born with only one ventricle, rather than two, in her heart, leaving her skin blue because her blood wasn’t receiving enough oxygen to carry throughout her body. She had heart surgery a day after her birth and her family was told she probably wouldn’t live very long.

But Mrs. Jones regularly defied the odds for someone with her condition and became a cardiac care nurse, working with the doctors who had cared for her at Children’s Hospital of Pittsburgh of UPMC before entering health care administration with insurance providers.

“I would always be amazed when I would see her come down the hall for a very serious appointment and to look at her, you would never know she had a problem,” said Lee Beerman, professor of pediatrics at Children’s Heart Institute.

He began treating her when she was a teenager, then worked with her when she became a cardiac nurse.

“She got as much out of life as anyone,” he said. “She was just part of the cardiac family here.”

Mrs. Jones, 47, of Edgewood, who was also known for her gardening and cooking skills as well as her love of Disney World, died of heart complications Feb. 6.

“She literally was told she was going to die from the day she was born,” said her husband, Ronan Jones, who knew her as a child in the neighborhood but wasn’t married to her until six years ago. “But she didn’t define herself that way, so I didn’t think of her that way.”

After what her family called a fairly normal childhood despite her condition, Mrs. Jones had a major heart surgery called a Fontan procedure when she was about 16 years old to improve the oxygenation of her blood. Her surgeon at the time, Bill Neches, lived in her Edgewood neighborhood, and she became close friends with his children, a relationship that passed to Dr. Beerman when he joined the team.

Mrs. Jones graduated from Woodland Hills High School and joined her sister, Jane Knific, who was 18 months older, at Penn State University, initially majoring in engineering before soon switching to health care administration. She was active on campus, helping to found a sorority chapter and becoming vice president of student government, where she was involved in pushing for construction of the Bryce Jordan Center and the university’s decision to join the Big Ten Conference for sports.

After graduation, she attended St. Margaret Hospital’s School of Nursing and worked as a nurse in New Jersey for two years before joining the staff at Children’s Hospital to be closer to her regular doctors.

Despite numerous surgeries — including an updated Fontan revision at age 36 — Mrs. Jones built a solid career at Children’s, eventually working to improve the record-keeping system for the cardiac unit. She later moved to Coventry Healthcare and Aetna, where she was a national project manager.

“She just had tremendous strength, a very flashy personality,” Dr. Beerman said. “She was a real partner in her health care. She was fun to be around because she would challenge what you would tell her, and she was usually right.”

Mrs. Knific said her sister loved cooking and gardening, growing vegetables such as onions and tomatoes. Mrs. Jones recently became president of the Edgewood Garden Club. She liked cooking with vegetables such as kale, which she began using before it became popular, and the opening of Whole Foods in East Liberty was right up her alley.

“[Cooking with vegetables] was very healthy for her and she loved it,” her sister said. “But she made a fabulous filet mignon that was to die for.”

She reconnected with Ronan Jones in the early 2000s, and he proposed six years ago while they were at Disney World, later the site of what her sister called their “princess wedding.”

Mrs. Jones didn’t let her health limit traveling, conceding to use oxygen when the couple visited a mountainous site. A train trip from Pittsburgh to Seattle also was a highlight.

“She just didn’t want to stay at home, so they went places” her sister said. “He knew and didn’t know her time was limited because she beat things so many times.”

A memorial service for Mrs. Jones was held Sunday at First Presbyterian Church of Edgewood. The family suggests contributions to the Dr. Bill Neches Heart Camp for Kids or the Heart Institute fund at Children’s Hospital of Pittsburgh Foundation.

Arrangements were handled by Thomas L. Nied Funeral Home of Swissvale.