Phillip Burch, M.D., a cardiothoracic surgeon at Cook Children’s, performed three surgeries on Sydni before her first birthday. He says Cook Children’s Heart Center sees about 500 surgical cases a year, with around 300 of them being open-heart surgeries. Most cases aren’t as severe as Sydni’s.

“She has a canal defect where the central portion of her heart didn’t form appropriately,” Dr. Burch explained. “The veins that drain her lungs did not return to their normal position.”

Sydni is the Peña’s third child. They say her pregnancy was normal, until they attended a doctor’s appointment at the 20-week mark.

“After the scan, the doctor came into the room, and I remember her face was different,” Ashlea said. “The doctor said she saw an issue with Sydni’s heart on the anatomy scan and was referring us to a maternal-fetal medicine doctor to get it checked out.”

The referral would be the beginning of a very long journey and a new normal for the Peña family. At their appointment, the maternal-fetal medicine doctor explained the challenges their daughter would face after birth.

“The first thing I remember him saying is, ‘Your daughter has a condition called Heterotaxy syndrome,’” Ashlea explained. “This meant her stomach was on the right side of her body instead of the left, and this condition caused her heart defects.”

The family visited Kristal Woldu, M.D., a fetal cardiologist at Cook Children’s, and learned Sydni would require open-heart surgery within 24 hours of birth.

“My husband broke down and cried,” Ashlea remembered. “That was the first time he realized this wasn’t a minor inconvenience, but this was going to require immediate intervention.”

After learning the devastating news, Ashlea began reading stories from other families whose children were cared for by Cook Children’s Heart Center. Still, the news was hard to process.

“It became real when she showed us the diagram where normal body parts were supposed to be, compared to what Sydni’s looked like in the early stages. We knew we had a big hurdle ahead,” Tony said.

After Sydni’s birth, the family was told to plan for a six-week hospital stay. This meant figuring out how they were going to care for Sydni, as well as their daughters, ages 2 and 5.

“We moved into my brother and sister-in-law’s apartment, and they moved into our home to take care of our older girls,” Tony said.

With this arrangement, the Peña’s were never more than three to five minutes away from the medical center and someone was always able to be by Sydni’s side.

Sydni’s projected six-week stay nearly doubled into 82 days at Cook Children’s. The first half was spent in the Cardiac Intensive Care Unit (CICU). Sydni was then moved into the step-down unit when she no longer required intensive care. Ashlea remembers how exhausting this time was, and how long the days and weeks seemed to drag on.

“I would run home and shower and come right back. The in and out was draining,” Ashlea remembered.

During Sydni’s first surgery, she had a shunt placed in her heart to help with her pulmonary blood flow. The surgery was successful, but when she came off of the ventilator, she had a hard time maintaining her oxygen levels. Nine days after her first surgery, the doctors informed the family Sydni would need a second surgery to revise the shunt. To make sure the procedure was successful, the medical team left her chest open for a several days while they monitored her progress.

With back-to-back surgeries and Sydni being on a bypass machine, she began having feeding issues.

”She had terrible reflux. She vomited everything up constantly, and wasn’t gaining any weight,” Ashlea recalled.

The Peña’s remember being optimistic, but every time they got their hopes up about going home, Sydni gave them a sign she wasn’t ready. That stress became obvious to cardiac intensivist Lane Lanier, M.D.

“One morning, I was sitting next to her bed and Dr. Lanier squatted down in front of me and took my hand and said, ‘Ashlea, you have something called ICU fatigue. I can tell you’re at the point where most people want to scream and throw something out the window,’” Ashlea remembered. “He reassured me we were going to get our baby out of the hospital. He couldn’t promise it would be the next day or week but assured me we would follow Sydni’s timeline and go home when she was ready.”

Ashlea says those words gave her the strength to go on and continue fighting for her daughter’s full recovery.

“When something like this happens, you aren’t given a choice, you go into survival mode,” Ashlea explained.

During their time at Cook Children’s, the Peña’s family members brought their older daughters to the medical center to visit their sister, have lunch and play outside.

“Cook Children’s does such a good job helping siblings and families during difficult times,” Tony remembered. “The music room, arts and crafts, the game room… all of those things were good for us to explore with our older girls.”

When Sydni was released, she was sent home on more than 10 medications, as well as a G-tube for feeding. The Peña’s had to get used to being home alone and not having Cook Children’s staff there to help around the clock. They were also full-time parents to three children for the first time. Ashlea said having Sydni enrolled with the Cook Children’s Health Plan (CCHP) played a major role in transitioning home.

“The most helpful part of CCHP has been our patient advocate Jamie,” Ashlea said. “She helped us get therapies set up for Sydni, as well as made sure we had the right supplies for her tube feedings. Knowing there is a nurse advocate to call when we encounter an issue has been a stress reliever for my family.”

Today, Sydni has graduated from most of her therapies and even learned to do a somersault with the help of her big sisters. While Sydni has come a long way, she still has another major open-heart surgery later this year. This surgery, a biventricular repair, will give her two ventricles, like other human hearts.

“We hope that she has good longevity and a good quality of life,” Dr. Burch said. “Based on the imaging we have, it’s reasonable to presume we can provide a good technical outcome for her.”

Sydni’s parents say they are grateful for Cook Children’s, as well as the valuable lessons they’ve learned along the way.

“I have learned to appreciate every moment of life because you never know when it’s going to be turned upside down for you,” Ashlea said.

The couple also offers advice for other parents who find themselves in their shoes.

“Do your research, speak up for your child, and ask questions,” Tony said. “Seek out trauma therapy once you can, it makes a huge difference once you realize everything you’ve been through.”