Baby playing with toy

Son playing with Mom

Saturday, 09 February 2008
Janice Peterson – DAILY HERALD

Stores around the country have red hearts in windows and Valentine’s sales aplenty in anticipation of Feb. 14, but families across America will also be commemorating Congenital Heart Defect Week. Heart defects are one of the most common problems for infants at birth, with approximately one in 125 children affected.

The rate in Utah is about 6.3 per 1,000. Bonnie Midget, director of public relations for Primary Children’s Medical Center in Salt Lake City, said 300 babies with the problem were brought to the hospital between August 2006 and October 2007. Approximately 40 percent of those babies were diagnosed before birth.

Primary Children’s has the only pediatric cardiology program in a five-state area, and it handles 96 percent of all cardiovascular surgeries.

“Some kinds of problems must be treated immediately after birth,” she said. “Others receive surgery several months after the birth.”

Carolyn Quigley found out during her 20-week ultrasound that her baby would be born with heart problems. Every time she visited the doctor after that, she only heard more bad news. Hope Quigley was born April 24, 2000 and had open heart surgery the next day.

“The doctor gave her a one in five chance of even making it through surgery,” she said.

Hope made it through the surgery and improved, but she did not make it to her next surgery. On Sept. 11, 2001, Hope died at just four months old. Carolyn Quigley said she wanted to find a support group to help her, but there were not many at the time.

“I felt at the time that I was the only one going through this,” she said.

Over the next few years, Quigley said she found some support groups and met other families whose children had heart defects. Although she enjoyed the connection, Quigley said she could not find a group that was as social and involved as she would like. In September 2007, Quigley and other families started the Intermountain Healing Hearts support group.

“I just didn’t want to see there not be any support,” she said.

Quigley said members of the group have worked to ensure new parents have the support they need. Often they do not want to leave the bedside of their sick baby, so the support group brings information to them. The members also work with nurses and hospital staff to contact parents of new “heart babies.”

Quigley said Intermountain Healing Hearts has a Yahoo group for its members to communicate, and it has an “Angels” group for parents who lost their babies. In October, four group members lost their children, and Quigley said the group is a good place for them to mourn.

Quigley said many new members have joined in search of families who have experienced the same trials. The group now has more than 60 families, after starting with five. Christina Davis joined the group in September with 5-month-old Jacob.

Jacob was born with transposition of the great arteries, a condition in which the aorta and pulmonary artery arise from the wrong ventricle and the body cannot receive oxygenated blood.

“Right after he was born, he was considered a blue baby,” Davis said.

Jacob’s condition is one of the most undiagnosed defects before birth, she said. Although he did not appear to be breathing correctly, Davis was told some babies take a little while to get the hang of it. Jacob was whisked away from the delivery room after 10 minutes, with everyone but Christina close behind.

“I was left by myself to just worry,” she said.

Oxygen did not help Jacob, and seven hours after delivery he was taken to Primary Children’s Medical Center. Once he arrived, doctors were able to determine he had a heart defect, and Jacob had open heart surgery when he was five days old.

After Jacob’s birth, Davis said she too searched for a support group for her son’s condition, but had trouble reaching anyone. Davis said she wanted to connect with other families and have a better understanding of her son’s future.

“What will my child’s future be?” she said. “Where will he be 10 years from now?”

Davis said having a support group has been a big help to her. Seeing other families and their now-healthy children has helped her to have a positive outlook about how Jacob’s life will be. Just after joining the group, Davis said she met a family with a 4-year-old who has Jacob’s condition. Meeting older children who have experienced his defect has helped her to have hope that he, too, will be OK.

“You would never know by looking at them what they had been through,” she said.

As long as Jacob’s repaired heart holds up, he will not need any more surgeries. He will have yearly echocardiograms and will need a doctor’s permission before he participates in some sports.

Hockey and football are already out. Even healthy kids can have aneurisms in those sports.

Talking with other parents has helped Davis to understand her son’s limitations and what he can do. She said increasing awareness of congenital heart defects will help other families find support and information as well.

Intermountain Healing Hearts has posters at Primary Children’s, and members visit the cardiology unit to meet new parents who may need some help. As part of CHD week, the group will have an open house at the hospital today at 11 a.m. for families to get to know each other. A booth will be set up on the third floor, and 500 heart-shaped sugar cookies will be handed out.

Davis said her young daughter will also be involved in the efforts, handing out pamphlets at school on Valentine’s Day.

“When people think of Valentine’s Day, it’s more than just the romance stuff,” Davis said.

The group’s Web site is intermountainhealinghearts.org.