“We were told about week 20 that there was a problem. We actually didn’t believe the first doctor, and we couldn’t find anybody to get a second opinion in Tampa, so we actually drove to Orlando.”
There a geneticist said Samuel had either brittle bone disease or thanatophoric dwarfism.
“I give that geneticist kudos for acknowledging my faith, because that was another really hard thing,” Evelyn commented. “We trust and believe in God, and some didn’t want to acknowledge that side of us, but that geneticist did.”
Pregnant women whose unborn children are diagnosed with thanatophoric dwarfism are often advised to undergo “therapeutic” abortion. If the baby is born, parents are advised to refuse life-sustaining treatment.
Evelyn told CNA that the doctors “looked depressed” when she and her husband left the office because it was a “lethal diagnosis.”
“I don’t think you’ll find a picture of a survivor in a textbook,” she remarked about Samuel’s odds.
Instead of Death, Life
“When we left there, I felt like God gave us a peace that passes all understanding. It was really amazing. Both my husband and I were just at peace.”
“Somehow in our hearts we knew, and I think that was a gift from God, that it was all going to be okay.”
Despite complications from polyhydramios, which is a condition of excess amniotic fluid, Samuel was delivered by C-section 35 weeks into the pregnancy.
His first weeks home were toughest on his parents.
“If he disconnected from his hoses, we had to get him hooked up immediately or he would turn blue,” she reported.
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“Initially, it was like that, touch-and-go. My husband would take the night-shift.”
Doctors had to give Samuel a tracheotomy and a ventilator because of a lung deficiency, a condition that is still with him, Evelyn explained.
Samuel still has times of troubled breathing, which require doses of abuterol. He also requires a treatment to remove fluid from his lungs.
Because his ribs are thick and rigid, Samuel lungs can press down on his stomach, but Evelyn doesn’t think it will become a big problem. “He’s a dwarf, so he’s a little guy,” she said, saying his small size and little growth may render this issue less of a problem.
“Now he is a lot more stable,” she said, reporting that Samuel is even going off the ventilator for short trial periods.
Though Samuel also requires a gastric tube, he now eats “very voraciously.”