LAS VEGAS, Nev. — A Nevada baby who was born with his heart and intestines outside of his body is beating the odds as he celebrates a year after his mother gave him life.
Last year, Desteny Amaya was informed that her son had a condition called Pentalogy of Cantrell after an abnormality was spotted during an ultrasound. Her doctor, Van Bohman, advised that the baby’s heart and intestines were forming outside of his body.
“Almost universally it’s fatal. These kids never survive; in fact this is the only one I’ve ever seen that has survived,” Bohman told KNSV-TV.
Amaya, when obtaining the news, decided to pray for her son.
“I use to never to believe in hope or God,” she explained to the outlet. “When I prayed for him, it was my first time praying.”
Amaya wanted to give her child life despite the diagnosis, but questioned whether doing so would be selfish. Bohman told her that her desires were okay.
“I was thinking, ‘Am I being selfish for me to want him to be born for him to go through all this?’” Amaya recalled to reporters. “But then I talked to Dr. Bohman and he explained to me it’s not selfish wanting your baby to be here.”
Bohman began planning for the C-section, and in September 2015, Ezekiel was born. His name means “God strengthens.”
“The skin was open when the baby was born, you could see the heart just sitting there, and the intestines were in a little bit of a sac but the heart was just right there open to the air,” Bohman remembered.
One year and a number of surgeries later, Ezekiel is thriving.
“Is he going to grow up and have a job, and be a father, and have a rewarding life? He will,” Bohman told KNSV-TV. “I think he’s looking really well. There might be some things that need to be tweaked down the road, but right now he’s doing great.”
Ezekiel’s father, David, encouraged others to trust God in their circumstances.
“For everybody that has a baby with a tough situation, don’t give up. Just have faith, and everything will come out good. God has something for you,” he said.