This is what Chase is doing:

“It can be incredibly rewarding when your vote has a local impact. Chase is giving away $5 million to various charities and needs you to help pick which ones. Simply vote for your favorite nonprofit and then get friends and others on Facebook to do the same. You can select from over 500,000 charities that focus on education, healthcare, housing, environmental issues, combating hunger, arts and culture, human services, and animal welfare. Give your charity the recognition it deserves and needs with Chase Community Giving.

It’s a new Way Forward for giving.”

Please help IHH earn some of this money by signing onto Facebook, becoming a fan of Chase Community Giving, and voting for your favorite charity (Intermountain Healing Hearts of course). This helps an organization that does some much to support our heart heroes and their families.

Please click below and vote today!!!

Mike Patton Jr. remembers the agony he went through after learning his soon-to-be born daughter had a heart defect.

Brinley Patton’s heart was smaller than an almond when an ultrasound detected a problem just 22 weeks into Rebecca Patton’s pregnancy. “It’s kind of like being tied to the railroad tracks and the train is coming. I had never heard of a baby’s heart defect,” said Patton, of Riverton. “The feeling and emotion of the whole thing was one of loneliness and no support whatsoever.”

Today, Patton and Carolyn Quigley, of Santaquin, are working to ensure other parents of children with congenital heart defects get help through Intermountain Healing Hearts, a support group they have formed. So far, 53 families have connected with the support group, which has a Web site, www.intermountainhealinghearts.org, and a free telephone line, 800-397-1174. It also operates a Yahoo chat group, which gets 300 to 400 e-mail contacts a month.

Primary Children’s Medical Center performs about 20 heart surgeries a month, Patton said. “We’d like to see more research dollars put into finding out what is causing heart defects. Some are genetic, but most are not,” Patton said.

Kaidence Stephenson is one of the success stories that gives hope to parents. So is Brinley Patton, who was born in 2004. She had four heart surgeries in the first 30 months of her life; like many children with heart defects, she also had eye and hip problems that required surgery. Despite those challenges, she is a healthy, growing preschooler today, her father said. “I want to show [other parents] how well she’s doing, that there is hope for them,” Patton said. “Most of [our effort] is trying to get parents with [similar] diagnoses talking to each other.”

brooke@sltrib.com

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.

Camp Wapiti

We are excited to announce that Intermountain Healing Hearts will be hosting a camp for heart heros and their immediate families this year at Camp Wapati, August 14th and 15th.

Activities include square dancing, an outdoor movie, games/crafts for the kids, symposiums for the adults, delicious meals and more.

Registration for this event is closed.

If you would like to make an donation to help sponsor a family, please click on the donation link below and follow the Paypal instructions.

We look forward to seeing you at this wonderful event.

Please click here to RSVP by June 15 so we can get a count for the food.

Schedule
4:00 Activities, Snow cones
4:30 Welcome, Introductions and Group Photo
5:15 Pizza Dinner, Heart-Shaped Dessert Contest
6:00 Magic Show and Parent Symposium, “The Need for Humor” by Maria Gamvroulous, Director of Medical Social Work

Gather your friends and family to participate in a one mile event to raise awareness for Congenital Heart Defects, the number one birth defect.

Directions:
Take 1-15 to the Orem Center street exit. Head east off of the exit. Stay on Center all the way through Orem, head down the hill into Provo (near the river woods shopping area) and turn south (right) onto 300 W. Follow this road around a slight curve to the park.
We will be at the west most pavilion for registration and check-in.

Just a reminder:
Check in/same day registration begins at 8am and continues until 9:15am. Same Day Registration is $20 per person or $80 per immediate family. Shirts are first come first served for the same day registration. Print and bring a form with you to the walk. Individuals with a CHD are still free.

Walk for Healing Hearts Schedule
Check in – 8am
Race begins – 9:30am
Group picture – 10:15am
Angel Ceremony – 10:30am
Door prizes – 11am until finished (must be present to win)
Individual Family pictures will be taken, if desired

There will be face painting for kids and thank you cards to sign for PCMC Cardiology/Cardiothorasic surgery.