Hailee-Anne won’t be playing soccer with her friends this year.
The active five-year-old would happily like to lace up her sneakers and hit the field, but her parents told her “No!”
It’s not that her parents, John and Andria Jones dislike the sport. Rather they’re concerned about her pacemaker. “If the ball hits her lower abdomen,” said John, “we’re in trouble.”
Five-year-old Hailee-Anne Jones was born in 2010 at Children’s Hospital of Philadelphia (CHOP) with a congenital heart defect (CHD). Thus far throughout Hailee-Anne’s five year ordeal, the Jones’ have experienced ups and downs – but they have not lost hope.
Heart surgery at young age
For John, 31, and his wife Andria, 27, the trouble began when Andria started having complications during pregnancy. Following her 20th week ultrasound, Andria had to return to her doctor several more times for tests.
“When my wife was pregnant, God spoke to me and told me this was going to be our miracle baby,” said John, pastor of The River Church in Allentown, Pa.
At just four days old, Hailee-Anne had open heart surgery and more surgeries would follow. Severe complications occurred during the procedure, so she was admitted inpatient for three months. During that time, John and Andria endured a two hour daily commute from their home in Easton, Pa. to CHOP. They lived two lifestyles – one at the hospital, the other at home and medical bills began to arrive.
Finally, Hailee-Anne was able to go home for two months, but John and Andria had to bring her back at five months old for her second open heart surgery. At the age of 2 ½, she had her third open heart surgery. And last year at the age of 4 ½, Hailee-Anne had a pacemaker inserted. The surgery was so rare that the last one performed at the nationally-ranked children’s hospital was in 2009.
A trip to the dentist
In a study done on pacemaker implantation, researchers noted that usually about one percent of all pacemakers are implanted into children. With infection among the most common complications that can occur, life wasn’t easy for Hailee-Anne.
The Jones’ soon learned that even the simple things could quickly lead to complications. One time, Hailee-Anne fell and chipped a tooth so her parents scheduled a dental appointment to have it examined. Acting on the side of caution because of her heart, the dentist referred her to her cardiologist. The cardiologist then referred her to another doctor who specializes in pediatric dental surgery. Then she was referred to CHOP and after four visits, Hailee-Anne’s tooth has yet to be extracted.
Living with a pacemaker
Hailee-Anne calls the pacemaker her “battery,” and it hasn’t shaken her spirit one bit. One year after its implantation and the Jones’ are still learning how to adjust to the settings, but say it has made a world of difference. Her good days are when she’s not sick and she’s able to play with other children.
John and Andria, college sweethearts, have two other children, Dilliard, age 7, and Brielle, age 3. They say that Hailee-Anne can’t run as frequently as she’d like. That’s why when playing with other children, her older brother, Dillard, looks out for her, making sure that other children play safely with her, and that she takes breaks.
Being near magnets and computers also causes concern. According to the National Heart, Lung, and Blood Institute, prolonged contact with items such as microwave ovens, cell phones and MP3 players should be avoided because the electrical signaling can alter the function of the pacemaker. An iPad may be a girl’s best friend, but for Hailee-Anne, hers has to remain at least six inches away from her diaphragm.
The position of her pacemaker in her lower abdomen raises another dilemma: sports.
Hailee-Anne asked her parents for permission to play soccer, but contact sports are out of the question. A collision could damage the pacemaker or shake loose the wires in the heart. John added that he and his wife compromised by allowing her to participate in dance and gymnastics instead.
A heart walk
Hailee-Anne is the Child Chair for the 2015 American Heart Association – Lehigh Valley/Berks Heart and Stroke Walk. The Jones family and the Crivellaro family, Andria’s relatives, are asking as many people as possible to support their effort and join them in the walk on September 27.
“Obviously we’re doing it for Hailee,” said John. “It’s something she has to live with daily. As a parent that’s a hard thing for your child to go through.”
The Jones’ faith has helped them withstand tests on several pre-natal trips to Andria’s doctor and Hailee-Anne’s three open heart surgeries. John and Andria are expecting their fourth child in January 2016. When their newest addition to the family arrives, a bedtime story they are sure to tell will be nothing short of a “miracle.”
For more information on the 2015 American Heart Association – Lehigh Valley/Berks Heart and Stroke Walk, go to: Lehigh-Berks Heart & Stroke Walk