“I try to take each day as it comes, focus on the life we plan to build when she does get the call,” her mom said. “She needs positive vibes around her.”
Bell was rushed to the hospital in Oct. 2021, just a month after her birth.Savana explained how she's riddled with anxiety as she waits for her daughter to obtain a new heart.The baby was diagnosed with dilated cardiomyopathy."As unclear as Leyla's future is, we are hopeful," her mom said.Cardiomyopathy is a general term for diseases of the heart muscle, where the walls of the heart chambers have become stretched, thickened or stiff.
“When Leyla’s heart stopped, I was in a state of shock I couldn’t comprehend what I was seeing,” Savana said.“Hearing we needed a transplant was scary, we knew the risks involved, the potential wait times, the fact it wasn’t a cure,” Savana explained. “Her life expectancy with no donor is unknown. Without the Berlin Heart machine, she would already be dead – it keeps her alive.
But with her new mechanical device, she has a better chance of survival until she finds an donor organ. “You aren’t waiting for someone else’s child to die,” Savana said. “You are praying that when a parent is given the devastating news their child isn’t going to live, that they help save yours. It’s the single most brave and selfless decision.”Bell’s parents Savana and Martin.“Waiting for the call is an extremely mixed bag of emotions,” she said, noting how she and her husband won’t give up hope that their baby girl makes it home for the holidays this year.
“I try to take each day as it comes, focus on the life we plan to build when she does get the call, as we can’t live in the vicious circle of negativity,” Savana said. “That’s no good for Leyla, she needs positive vibes around her.”
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