AURORA, Colo. (CBS4) – Spend just a few moments with the O’Leary family, and it’s easy to see so much love in their small home. Yet what’s not so obvious is the unimaginable struggles their 4-month-old twins have endured in their short lives.
“They’ve spent half their life in a hospital already,” said Kallie O’Leary, mother of twins Salem and Luci.
It began in early December when the babies were about a month old. Salem wasn’t making sounds when she cried, causing concern for Kallie and her husband Kenny. At the time, the family was living in Littleton, so Kallie brought her babies to a nearby hospital.
“They found [Salem] wasn’t breathing very well so they hooked her up to oxygen,” Kallie told CBS4’s Kelly Werthmann. “She looked over at Luci and she was also breathing kind of heavy, so they checked her out and noticed she wasn’t breathing well.”
Doctors determined both infants needed to go to Children’s Hospital in Aurora. They were each transported in separate ambulances.
“I honestly didn’t think that Salem was going to make it,” Kallie said. “We were told by a few doctors that she probably wouldn’t have if we hadn’t taken her to the hospital.”
Kallie said it was like “being in the twilight zone.”
“I didn’t understand what was happening,” she said. “It was really hard because I wanted to be in three places at once. I wanted to be with Salem, I wanted to be with Luci, and I wanted to be with Mavis – our 2-year-old at home.”
Salem and Luci were admitted to the NICU and during a CAT scan, Salem’s heart went into failure.
“She went into cardiac arrest for probably 30 seconds,” Kallie said. “The whole process, because she did code, was probably about a minute long, but to me it felt like forever.”
Doctors took x-rays which revealed Salem had an enlarged heart. Similar tests showed her sister, Luci, had the exact same condition.
“This is really uncommon. This is the first time I’ve seen this… for twin babies to have what we called dilated cardiomyopathy,” Dr. Scott Auerbach, pediatric cardiologist at Children’s Hospital in Aurora, said. “It’s extremely rare. I don’t have many colleagues that have seen this either.”
Auerbach is Salem and Luci’s cardiologist. He explained the babies were born with an abnormal gene that causes the heart muscle to be weak.
“That weakness of the heart muscle lead to the enlargement of their hearts and poor muscle function,” he said.
Even though the infants are growing and developing normally, it’s possible Salem and Luci will both need a new heart before they learn to walk.
“I’m worried that they could need a transplant over the next few months to couple of years,” Auerbach said. “We just have to watch how well they eat and their growth charts. We’re taking it a week at a time, always knowing that we may need to move them towards the transplant list.”
Right now, Salem and Luci are able to live at home, surviving on medications and weekly doctor visits. The unknown, however, of when they may need to be put on a transplant list is difficult for their parents to comprehend.
“The horrible part is for them to get a heart. The worst is to happen to some other family,” Kenny O’Leary said.
Auerback told CBS4 the wait for a heart transplant for a baby, on average, is about six to 12 weeks. He added there are options to help the sick child until a donor is available.
“We always have medications we can give to help the heart while they’re waiting,” he explained. “We also have artificial heart pumps that can take over the work of the heart before a donor heart becomes available.”
The O’Leary family, as well as their medical care team, are holding onto hope that Salem and Luci will beat the odds.
“Honestly, I’m just thankful that they’re both here,” Kenny said.
And, no matter what the future holds, they’re treasuring each moment together and loving one another with all their heart.
“I wouldn’t trade any of it for the world,” Kallie said.
Most of the medication Salem and Luci rely on is not covered by the family’s insurance.
To help cover the costs, the O’Leary’s are holding a “Heart 2 Heart” fundraiser and silent auction on Sat. Feb. 15. The public is welcome to visit the Boggy Draw Brewery in Sheridan from 2 p.m. -7 p.m. That’s where the family will also provide more information on the disease the twins are battling.
LINK: O’Leary Family GoFundMe