Cape Coral twins together for holidays after congenital heart defect scare

Everyone together at home for Christmas. That’s the wish for one Cape Coral family since they were blessed with twins in the spring.

Days later, doctors discovered one of the baby boys was born with a congenital heart defect.

For the last several months, their mom basically lived at the hospital as her little Elijah fought to survive.

Now, the Stebbins family is living with its Christmas miracle.

Twins are supposed to be together forever, not separated at birth. Benjamin and Elijah Stebbins were born on April 14th, at 31 weeks.

“First four days, they were just going through all the motions of preemie babies,” said Susel, their mother.

Susel and Eric are mom and dad to the twins.

“They were doing all the tests, and Benjamin’s bilirubin was really high, so all the focus was on him. We thought he was the one doing bad, and he was OK, and Elijah was having sleep apnea,” Susel said.

Doctors at Golisano Children’s Hospital didn’t like that, so they ordered tests, and when the results were in, they told Susel and Eric that Elijah had to stay in the hospital for a while.

“All of a sudden, we go from planning to bring home two healthy babies to now we’re trying to learn what a congenital heart defect is,” Susel said.

The words “congenital heart defect” are scary enough.

Doctors told Susel and Eric that their little one was born with a condition much worse: tetralogy of fallot.

Very rare, it’s a combination of four heart defects.

The narrowing of the valve between the heart and lungs, which reduces blood flow from the heart to the lungs. A hole between the bottom heart chambers, which requires the heart to work harder to pump blood through the body and likely weakens the heart over time.

The aorta is in the wrong place. It’s shifted to the right, directly above the hole in the heart wall. This changes how blood flows from the aorta to the lungs, and then there’s a thickening of the right lower chamber of the heart, which, over time, may cause the heart to fail.
Doctors told Susel and Eric that their happy baby had to have open heart surgery.

Susel said, “Which is a huge, huge surgery. We were in the hospital for two weeks, living two hours away from home. I had to leave my other twin here, and I’m there by myself, without my husband, without my kids, without my family.”

Elijah came through like a champ.

“When we saw him after it was a lot because he’s so little, and he was so happy always,” Susel said.

No more nights in the NICU, just happy days at home with his brother Benjamin and his family.
Susel and Eric are on edge with every little cough.

“We have to constantly make sure that he’s breathing, make sure that he’s eating,” Susel said.

His parents told us they learned a lot this year, but maybe their most important lesson came from their young son, who’s always smiling even when he must endure another hospital visit, test and procedure.

“We complain about the little things, like, I’m late for work or, something small, and here he is, having a very challenging start to his life, and he’s still smiling through all of it,” Susel said.

Doctors, nurses and tests will always be part of Elijah’s life, but his new normal is home, just in time for the holidays.

This is a merry Christmas for the Stebbins, and you can bet they’ll have a happy New Year, too.

Susel wanted to offer this message to all the expecting moms out there. Prenatal care is critical.

Don’t skip your appointments, ask every question even if there are no complications. She said that was key to their family’s ability to cope with Elijah’s condition and get through it.