McHenry family waits in California for 1-year-old daughter’s open heart surgery

Hannah Willingham had two open heart surgeries for congenital defect by age 3 months

Hannah Willingham if McHenry turns one year old on June 2, 2023, and is set for a life-saving open heart surgery on June 7 at Stanford University's Lucile Packard Children's Hospital. Her first open heart surgery was at just two weeks old.

On Tuesday, Jeremy and Anne Willingham found out the surgery set for Wednesday to save their daughter’s life would be put off for another week.

Another, sicker baby needed open heart surgery in her slot. So Hannah, who turns 1 on Friday, won’t have her heart fixed until June 7, Anne Willingham said.

In the meantime, the family is staying at a Ronald McDonald House near Stanford University’s Lucile Packard Children’s Hospital. Doctors at that hospital are considered the U.S. experts on repairing Hannah’s specific heart defect, Anne said.

There were no signs that anything was wrong with Hannah’s heart before her birth on June 2, 2022, at Northwestern Huntley Hospital. Willingham’s 20-week anatomy ultrasound was clear with no signs of a heart issue.

The McHenry mother had a “totally healthy, normal pregnancy,” she said.

It wasn’t until 24 hours after Hannah’s birth that nurses discovered the newborn’s oxygen levels were too low.

Doctors “did not give us any details at that point. They were not the experts and were not able to give a diagnosis. But we could tell by the looks on their faces that something was wrong,” Anne said.

Hannah was taken by ambulance to Chicago’s Lurie Children’s Hospital. Anne and Jeremy drove into Chicago, where they got the grim news.

Their daughter was diagnosed with Tetralogy of Fallot and pulmonary atresia. Her tiny heart was not pumping fully oxygenated blood through her body.

According to the American Heart Association, babies born with Tetralogy of Fallot have four separate heart deformities. Hannah has five.

Getting that news was “kind of like an out-of-body experience. You want to scream at the top of your lungs. You are completely helpless and have no control of the situation. Your whole world crumbles in a second,” Anne said. “It is like being hit by a truck.”

The specialists at Lurie immediately reached out to doctors at Stanford who recommended surgery to put in a shunt to help Hannah’s heart move oxygenated blood. That surgery came when she was just two weeks old.

Then, at a three-month visit to map Hannah’s heart for the next procedure, there was bad news. A clot had formed on the shunt and it needed replacing.

After both surgeries, Hannah recovered quickly.

“She was a superhero and recovered really well. She was out of the hospital on the seventh day after surgery,” Anne said.

They were also able to bring Hannah home and get bigger until the final surgery to fix her heart.

Anne went back to work in October, teaching second grade at McHenry School District 15′s Valley View Elementary. Her friend, Melissa Cholewinski, stayed at the house to watch Hannah, except when there were doctors appointments at Lurie’s.

On those days, Cholewinski was the long-term substitute for Anne’s classroom.

She has also helped out with fundraising, creating a GoFundMe account to help cover travel and meal costs in California and helping with other fundraisers for the Willinghams.

Being with Hannah and the Willinghams has taught Cholewinski about being happy and finding joy in the little things in life.

“When you are going through something major, something big, you can still find a reason to smile,” she said.

She is with her most days when Anne is working. Hannah can’t go to a typical daycare because of her medical needs and there are medications to take every day.

They also use an iPad to update 17 different pieces of information about Hannah each day and weekly telehealth calls with a nurse practitioner to keep an eye on Hannah’s development.

Hannah did grow, getting strong enough for the last surgery. She is in the 90th percentile for her height and weight and is hitting all of her development milestones – except for learning to crawl.

“She scoots around on her butt” instead of crawling, likely to avoid putting pressure on her chest, Anne said. “She is very determined, but she does run out of breath easily.”

The family is now in California, along with their 6-year-old daughter, Emilee. They didn’t know where they would be staying until they landed last week, and the Ronald McDonald House called to say a room had opened for them.

Once the surgery is complete, Hannah will have yearly checkups and possibility another surgery later, around age 10, to replace the shunt.

As the surgery is delayed, they plan to spend Friday celebrating Hannah’s birthday at the San Fransisco Zoo.

Her mother said, “There will be balloons and all the cake she wants to eat.”

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