“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.
“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.”
“He enjoys eating. That’s a real surprise. It’s very unusual for him to take to eating the way he has.”
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Evelyn told CNA her son, like other children, likes to crawl and play with balloons and toys. Noting his condition’s description “thanatophoric” derives from the Greek word meaning “death-bringing,” she joked that it really should be called “life-bringing.”
“He’s a joy, I don’t know how else to put it. One of the doctors said that he looked at his x-ray and looked at Samuel’s structure, and then looked at Samuel sitting on the hospital bed smiling.”
“The doctor said, ‘The two pictures don’t match!’” Evelyn told CNA.
Addressing other women who face such trials, she said “My heart goes out to women who are pregnant and are given negative diagnoses.”
She said she has corresponded with other women whose unborn children have thanatophoric dwarfism or other severe conditions.
“We’ve lived this journey, and we want to be able to hold a hand out to those behind us and say ‘Look, nothing is impossible with God’.”