Supporting others in their time of need

SEELEY LAKE – When Lindsey and Scott Eggeman learned that their first child had a congenital heart defect, they were terrified about what the future would bring for their son Angus. However after getting a second opinion and finding support from other families, they found comfort and reassurance. Now Angus is an active, six-year-old and they are reaching out to other families in need of the support.

At 22 weeks pregnant, the Eggemans met with a pediatric cardiologist in Missoula after seeing that Angus's heart had a defect on an ultrasound. A congenital heart defect (CHD) results when the heart, or blood vessels near the heart, do not develop normally before birth.

They learned he had an interrupted aortic arch, instead of the arch coming down and supplying the rest of the body with oxygenated blood, it went straight up to his brain. He also had an atrial septal defect, a hole between the two atrium, and a ventricular septal defect, a hole between the two ventricles. Lindsey said while he was fine in utero, he could not live outside of the womb without intervention.

Their cardiologist didn't mince words, "He won't be an athlete...he probably won't run track...he could need a heart transplant some day...he could be developmentally delayed," Lindsey recalled. "It was terrifying especially when he laid out those scenarios."

Lindsey's doctor recommended they go to Seattle Children's Hospital for Angus's birth at 37 weeks. However, because of the gravity of the diagnosis and because Lindsey's family lives in Vermont, they decided to get a second opinion at Boston Children's Hospital when she went back home to a wedding.

"The doctor at [Boston Children's Hospital] was so different. He said there will probably be some bumps in the road but this is a completely repairable, fixable defect," said Lindsey. "We were given the worse case scenario [in Missoula] and that is what we heard. What we needed was confidence and telling us that it is going to be okay. That is what we got in Boston."

When they received the diagnosis, Lindsey was hesitant to reach out for support.

"It was actually helpful to hear about my uncle and his son who both had heart defects," said Lindsey who had three people on her mother's side with aortic arch issues.

Once she knew the procedure to repair the aortic arch, Lindsey logged onto a Yahoo Congenital Heart Defect Chatroom and asked if anyone had ever had a child with this heart defect and had this procedure.

One person emailed her back and shared the story of her daughter who was six and doesn't have any lasting issues.

"That alone changed my outlook and my hope for the situation," said Lindsey. "That stuck with me about how powerful peer-to-peer support can be even if it is just through the Internet."

Angus was born Nov. 7, 2012 at 40 weeks. He had open heart surgery when he was two days old. They repaired his aortic arch by sewing part of his pericardium, the sack that goes around his heart, into a little tube and sent it down. The holes between his chambers were also repaired.

Angus was on an external pacemaker when he came out of surgery which was common. However when the heart was not receiving the signal to pump after 10 days, he had to have a pacemaker installed 14-15 days after the first surgery. Scott had returned to Montana and the second surgery resulted in more complications than the first leaving Lindsey to deal with it alone.

Lindsey remembered running into a dad of conjoined twins that was living in the same group home. He asked her how she was doing. When she told him she just wanted to go home, he said it must be so hard to not have her husband with her.

"You have conjoined twins and you are showing me empathy?"was the question Lindsey asked herself. "It definitely put things in perspective for me."

Angus was released from the hospital 28 days after he was born. Angus's defect was repaired and they all got to go home. Eggemans learned that not all families are so lucky.

Six years later, Angus is still completely dependent on his pace maker. However Lindsey said, "he pretty much has no restrictions."

* * * * *

When the Eggemans returned to Missoula, Lindsey learned that KPAX Chief Meteorologist Erin Yost had a child six months older than Angus with a CHD. She reached out to her for support.

"It was just good to have someone locally that I could ask questions [mom to mom]," said Lindsey.

Lindsey also sought online support groups because she wanted to help other families going through the same situation.

"It is scary," said Lindsey. "You have questions and you don't know where to go."

She found Mended Little Hearts, a organization formed under the national organization Mended Hearts, the adult heart disease nonprofit.

Mended Little Hearts provides hope and support to children, families and caregivers impacted by CHD. It offers many services including group programs, peer-to-peer support, education resources, hospital outreach, awareness initiatives, online connections and advocacy.

Lindsey appreciated that the group connected families with the same defect for support. However she quickly learned that there was not a group in Montana. She, Yost and another mother Beth Schultz from Helena hatched the plan to create a Mended Little Hearts group in Montana.

Through connections with families affected by CHD, they formalized Mended Little Hearts of Montana in 2013. Lindsey is currently the lead coordinator for Montana's group.

"We recognized that we live in a rural state. Everyone that gets this diagnosis, 1 in 100 babies, will be traveling outside the state for care," said Lindsey. "In a rural state, it can be isolating and hard to find those connections so it is important for me to give back and help someone that was in a situation like ours."

It is free to be a member of Mended Little Hearts. Members receive a newsletter and take advantage of all the programs within the organization.

Currently the Montana group assembles Bravery Bags, care packages for families that are newly diagnosed or in the hospital. These are handed out through the cardiologist or directly through the members. They also give Bereavement Bags for families who lost their child to a CHD.

"It is something simple but it just that little symbol that someone is thinking about you and someone has walked in your shoes and they are there if you need them," said Lindsey.

The group hosts get-togethers including ice cream socials around the state in Billings, Great Falls, Kalispell and Missoula. Since there is no children's hospital in Montana, visitations are either in person or through social media. Mended Little Hearts of Montana has their own private Facebook group for moms, dads and primary caregivers for children with a CHD.

For the past five years, the group has hosted a Valentines Family Bash around Congenital Heart Defect Week, Feb. 7-14.

"The intention [for the Family Bash] was to make a name in the community for the group and recruit [new members], while raising awareness for congenital heart defects and getting the heart families together to celebrate and have fun," said Lindsey.

This year's event is from 3-6 p.m. Feb. 16 at the Barn at 8500 Mullan Road, Missoula. The public is invited to the free event including balloon animals, face painting, live music, photo booth, crafts, free dessert bar and information tables including Gone Too Soon of Missoula, Huntley's Helping Hands CuddleCot Campaign and Mended Little Hearts. There will also be raffles and a silent auction to raise money to support the group's mission.

For more information about Mended Little Hearts of Montana visit their Facebook page, visit Mended Hearts website http://www.mendedhearts.org or email montanamlh@gmail.com.