Kankakee family stays strong through baby’s rare heart diagnosis

When it comes to their daughter, Ella, Kankakee couple Juan and Christina Sanchez are all heart.

As their youngest child’s first birthday approaches, the husband and wife have more reason than most to celebrate.

They were not always certain Ella would reach age 1.

Born March 10, 2024, with Shone’s complex, a rare congenital heart condition that affects blood flow in the left side of the heart, baby Ella has already had two open-heart surgeries, the first at eight days old and the second at just shy of three months.

Left untreated, Shone’s is often fatal, but Ella’s condition was discovered early. She is now being monitored in the high-risk clinic at Advocate Children’s Hospital in Oak Lawn.

According to Mom, Dad and doctors, Ella is “thriving.”

“She’s hitting all her milestones,” Christina said. “[The doctors] are just in awe when they see her. She’s doing great. She’s truly a warrior.”

Meet the Sanchez family

Originally from the Chicago area, Christina, 34, and Juan, 35, married in 2012 and moved to Kankakee County in 2013.

Christina attended Kankakee Community College and worked as a certified nursing assistant before becoming a stay-at-home mom. Juan works as a branch manager for Stanley Steemer.

In addition to Juan’s two teenagers, Elaina, 17, and Mia, 15, the couple have three children together, Savannah, 3, Adrianna, 2, and Ella, almost 1.

Ella fit perfectly into the family picture.

“She is a goofball. She’s very headstrong. She’s very determined,” Christina said.

Ella has recently been learning to play hide and seek with Savannah and Adrianna. She is eager to keep up with her sisters.

“I think the biggest reassurance I got throughout this whole thing was looking at Ella and how she was getting through this,” Juan said. “I think she’s a very strong baby, and that is always in the back of my mind. Deep down, I feel like she is gonna be just fine.”

A rare diagnosis

At 20 weeks pregnant, a fetal echocardiogram revealed that the left side of Ella’s heart was smaller than it should be.

Christina was transferred from Comer Children’s Hospital in Chicago to Advocate Children’s Hospital, where pediatric cardiologist Dr. Eleanor Ross used a state-of-the-art fetal ultrasound machine to diagnose Ella.

Still months away from taking her first breath, Ella was diagnosed with Shone’s complex, which accounts for less than 1% of all congenital heart disease.

“A lot of families with babies with the condition, they don’t know until the baby is born,” Juan said. “They are told after they deliver. So for them to find it early and prep us for what was coming when she was born, it made this journey a lot easier.”

The cause of the condition is unknown.

Ross noted there is nothing parents do to cause congenital heart disease in the vast majority of cases. Hearts are formed by about six to eight weeks of pregnancy.

“What I often will say to patients is, it’s really a miracle that anyone’s heart develops normally,” Ross said. “The heart is such an amazingly intricate structure, and we know if one part of the heart develops in a way that’s not typical, there can be a cascade effect on other structures within the heart.”

Treatment and outlook for Shone’s

Ella would have to undergo a series of three heart reconstruction surgeries, known as the Norwood, Glenn and Fontan procedures.

None of the surgeries will “fix” Ella’s heart, but the goal is to reroute the blood and support circulation as much as possible, Ross explained.

The Norwood, an operation to ensure blood flow is controlled enough to prevent damage to the heart and lungs, was performed on Ella at eight days old. On a one-to-five scale of complexity for heart surgeries, Ella’s Norwood surgery was considered category five, Ross said.

A baby’s heart is about the size of a walnut, she noted.

The Glenn, where a large vein that carries deoxygenated blood from the upper body into the heart is disconnected from the heart and attached to the pulmonary artery, was done at around three months.

This was several months earlier than planned, as doctors found one of Ella’s arteries was reclosing after her first surgery.

The Fontan procedure, where a large vein that carries deoxygenated blood from the lower body into the heart is disconnected from the heart and attached to the pulmonary artery, will be performed when Ella is around 2 to 3 years old.

The Fontan may be the last surgery she needs, but she will need to be closely monitored for the rest of her life. The condition has the potential to shorten life expectancy or cause other health issues, like liver, kidney or thyroid disease.

However, Ross said she never wants families to give up hope.

“These kids live full lives, they really do,” Ross said. “They might not run the Chicago Marathon — and neither will I — but they go on to live full lives.”

February is Heart Month

February is American Heart Month, designated to raise awareness about heart disease, the leading cause of death in the United States.

Since Ella’s birth, Juan and Christina have committed to spreading the word about rare childhood heart conditions and the need to fund research for preventions and cures.

They plan to participate in a Heart Walk in June which raises funds for research and education.

Christina has been sharing her family’s journey on TikTok, where families have reached out thanking her for being open about their experience. They also found hope on social media when seeing older children born with Shone’s playing sports and living normal lives.

“When I found out, that’s what I looked for. I looked for stories,” Christina said. “I looked for positive stories and positive outcomes, people who have been in my shoes.”

The couple are planning a special “1 my heart” first birthday party for Ella, as well as a heart-versary party to celebrate the anniversary of her first heart surgery.

The theme of the party seems fitting.

Though born with an atypical heart, Ella also happened to be born into a family with more than enough love to go around.