It was at her 20-week ultrasound appointment that Jason and Tanya Wedehase learned their second child, Eli, had a congenital heart defect.
And for that — they consider themselves to be one of the fortunate few.
“A lot of times when kids are diagnosed, it’s mom takes the baby to the hospital because they’re not eating right; they’re not gaining weight; they’re not breathing right. That’s when they find out the baby has a heart defect, and needs surgery tomorrow,” Tanya explained. “I was a little bit prepared in the sense that I knew before he was born. But at the same time, I wanted to know what it was like to be a heart mom — what it was like on the emotional side of it.”
Even with all of the educational (and visual, thanks to the wonders of YouTube) resources available online, Tanya was still missing a vital area: the local support connection. That is, until she was introduced to Mended Little Hearts of Fresno.
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The national nonprofit is a volunteer-based, peer-to-peer organization that acts as a support group for children diagnosed with CHD and their families.
Tanya has been the Fresno chapter’s lead coordinator for the past year, helping to plan and facilitate monthly meetings, group outings and events, and ensuring Mended Little Hearts of Fresno’s largest community outreach program, Bravery Bags, are prepared and ready to be dispersed at Valley Children’s Hospital when needed.
“Bravery Bags are little tote bags with basic toiletries, a journal, an informational book and pamphlet on Mended Little Hearts and basically letting other parents know that they’re not alone,” Tanya said. “My biggest passion is to be able to support other moms and families. Even though my son might have a different diagnosis or expectation of life, we’re still on the same paths and have the same battles as far as going through surgeries, battling infections and recoveries. We all go through it together.”
And for the Wedehases, it’s those special friendships and relationships formed through Mended Little Hearts of Fresno that have helped them endure Eli’s three open-heart surgeries — all scheduled before his 7th birthday this past February.
Eli was diagnosed with hypoplastic left heart syndrome, requiring his medical team to initiate a three-stage plan that started when he was just 2 days old. Eli underwent a 10-hour surgery and four-month recovery at Valley Children’s Hospital before he was able to go home for the first time.
“He had a long recovery — he always has a long recovery,” Tanya said. “One of the first things we learned was that not every heart kid follows the textbook or does what they’re expected to — not every heart defect is exactly the same.”
The original course of action was to perform Eli’s second open-heart surgery between 3 and 6 months of age. But with his delayed recovery and elevated blood pressure in his lungs, that was postponed until he was 2 1/2 years old.
Tanya and Jason kept their son in extreme isolation within that period to get him to that operation — a simple cold could have been fatal in his fragile state.
After another lengthy recovery, the following three years would find Eli living life as any other normal, fun and charismatic boy. But a few days before his third surgery on Jan. 14 of this year, Tanya received a call from Valley Children’s Hospital — there had been a change in plans.
The group of surgeons working on Eli’s case decided a complete repair on his heart instead of the planned surgery would give him a better prospect for a healthier, stronger and longer life. It was risky, but the reward was too great to pass up.
On Thursday, April 28, the 7-year-old kindergarten student surprised his class at Washington Elementary School in Kingsburg, spurring on an impromptu chant of “Eli’s back, Eli’s back!” from his overjoyed peers. He had spent nearly 12 weeks at Valley Children’s Hospital after the extensive, 25-hour surgery, coding twice and fighting for his life before he was deemed well enough to return home.
And while the surgery has left Eli more dependent and weaker than before, the boy that walked into that classroom was the proud owner of a now functioning, four-chambered heart — something Tanya had never thought was a possibility.
She credits her Mended Little Hearts of Fresno friends for stepping in and providing support during the parents’ months-long stay at the hospital, and is grateful for their shared understanding of what it’s like to be in their shoes.
“I had moms bringing meals, bags of snacks and sitting with us during that 25-hour surgery so we weren’t alone,” she explained. “Eli celebrated his 7th birthday in the hospital, and he’s a huge ‘Star Wars’ fan. Heart friends sent a storm trooper to visit him, and it’s little things like that — when you’re dealing with all of the emotions and recovery — that we don’t think of. They’re thinking of special ways to treat the family, and that’s something he’s going to remember forever.”
Eli and other CHD kids will get another opportunity to see characters from George Lucas’ intergalactic universe at Fresno’s inaugural Superhero Heart Run on Sunday, May 22 at Woodward Park.
Mended Little Hearts of Fresno and Heart Heroes are partnering to bring the CHD-focused run to the area — the farthest west it’s ever been — in hopes of raising local awareness of the most common birth defect, as well as let other CHD families know there is community support.
The event will include family activities, an ambulance for the younger participants to look through, photo opportunities with race cars, a superhero parade highlighting the CHD heroes and appearances by 501st Legion, Valley Children’s Hospital’s mascot, George, Parker with Fresno Grizzles and Mended Little Hearts’ mascot, Stitch.
Before the 5K and 2K walk/ runs, The Little Gym of Fresno will provide a brief warm-up for the CHD warriors and other children in attendance. Tanya said the 2K route will be stroller and wagon-accessible for those who are unable to walk the entire distance.
And as a superhero-themed event — costumes are definitely encouraged.
“The proceeds MLH gets will got toward funding the Bravery Bags and being able to expand that program to other areas,” Tanya said. “One of my biggest hopes is to do a reunion picnic with the PICU staff because we make a huge connection with the doctors, nurses and aides in the ICU, but they always see our kids at their sickest. I would love to throw together a reunion where the staff from the hospital come see our kids and spend time with them when they’re healthy.”
Registration begins at 8:30 a.m. All registrants will receive a custom Superhero Heart Run cape.
▪ To learn more about how you can support and send donations to Mended Little Hearts of Fresno, visit www.facebook.com/mendedlittleheartsfresno.