The past year has been one full of ups and downs for Cecilia Sit, 40, and her baby, Jed Russell.
Last February, Russell underwent a lifesaving surgery only days after he was born for the removal of a giant complex occipital encephalocele, a lesion on his head containing parts of a triplet that never fully formed.
The surgery, the first successful one of its kind in the history of The Bahamas, was headed by Professor Magnus Ekedede, a neurological surgeon.
Sit yesterday described it as a “miracle”. But she said the year since then has been difficult. She said she knew the next steps for Jed would be fixing his heart, which had holes in it.
“It was a very hard year and a half for me,” she said.
“So, Dr. Magnus had his instructions,” she said.
“Every morning I would measure the circumference of his head, making sure that the brain fluid was not overflowing and then also making sure that he has no temperature. We check his temperature every morning.
“And [Jed’s cardiologist Dr. Jerome] Lightbourne he gave me one of the hardest tasks ever. He said to make sure he doesn’t cry. I was like this is a baby, how do I make sure he doesn’t cry? Every time he cries his oxygen level would go down. Normal people would be 98 to 100 percent [oxygen saturation level].
“We’re talking about going down to 50s and 60s.”
Sit said that Jed had a shunt replacement about two months after his initial surgery, but weeks later she noticed a change in her baby’s demeanor.
A trip to the emergency room at Princess Margaret Hospital quickly turned into Jed being airlifted to Joe DiMagio [Children’s Hospital] in Florida in the middle of the COVID-19 pandemic.
“When we arrived there one thing that really shocked him was giving him a COVID test,” Sit said.
“I mean it was his first COVID test ever. He cried and he cried and they quarantined us for almost six hours.
“That was the longest six hours of my life, when you’re watching the stats of your baby drop from 80 to 60 to almost 40. And he was turning blue, blue lips, blue fingers, blue toes.
“It was hard but we finally got in the ER.
“They waited 14 days in the pediatric ICU just to make sure he didn’t have any more infections, because he had an infection of his brain fluid.
“And then they did his heart surgery. They found more than holes in his heart. They had to put in a synthetic valve in his heart. So, with that said, his heart was repaired.”
Not long after, however, Sit said Jed developed paralysis of his vocal chords, requiring another surgery.
But she said that since then, things had been looking up. A checkup in November revealed that Jed’s vocal chords were moving.
“The heart is doing well,” she said.
“Dr. Magnus has been checking up on him and Dr. Lightbourne has been checking up on him.” But last month, Sit said she knew something was wrong when he stopped sleeping and eating and his head began swelling again. It was discovered that a ventriculostomy to drain fluid from Jed’s brain had closed up.
Around the same time, Sit said she found herself unemployed and without health insurance for both herself and Jed.
“My job told me that they no longer needed my service because I refused to sign away some contract rights,” she said.
“So, with that said it means his insurance is gone as well, as of March.”
But Sit said a replacement shunt to solve the issue of fluid drainage had been working well so far.
She said that while being uninsured is a struggle, Jed’s doctors have been gracious, and she has a strong support system of family and friends, whom she knows would help her if ever necessary.
Yesterday, Jed smiled in his mother’s arms, the scar from his head surgery is still visible. He made occasional noises, blowing spit bubbles and twirling his mother’s hair in his right hand.
Sit said Jed has difficulty moving the left side of his body, but it’s been improving with therapy.
“… We’re looking at him trying to talk, making noise, repetitive sound speech and moving a lot. …
“He is a happy baby. God wanted him to live. The doctors made it happen and we want him to grow into a strong and healthy boy.”
While yesterday Jed appeared to be the image of a happy baby, his struggles over the past year became apparent when observing his twin brother, Michael Russell Jr., who walked around Professor Ekedede’s office, peeking curiously over the tops of chairs at his mother and brother.
“They were both born at almost 34 weeks, and Michael is walking,” Sit said.
“He is potty trained. He’s talking and he’s making gestures. He tells you when he’s hungry.
“But miraculously … last month, Jed stated to tell me he doesn’t want anymore food.
“He shakes his head no. Before, whatever I’d feed him he would eat. He couldn’t tell me anything. But now, he … turns away his bottle.”
Sit said that Michael is Jed’s top supporter.
“His twin brother is like a babysitter,” she said.
“Just by him crying, his brother would go ahead and rock the chair, and he would speak with him and talk with him. So, his brother is really really supportive, even though he’s only 14 months.”