I would like to tell you the story of Jake. No one else is telling Jake’s story. The people in his life have moved on. I don’t know if his mother thinks of him. She never met him. Jake was born to a 14-year-old girl in Sudbury. He was born at 28 weeks gestation. I can imagine her as a high schooler who starts to wear bigger sweat shirts because her clothes are getting tighter. Or maybe she didn’t have to change the way she dressed at all. Maybe she didn’t look pregnant because when Jake was born, he weighted two pounds and one ounce. Immediately after he was born, he would have been whisked away to be intubated. Often when babies are born at 28 weeks, their lungs don’t know that they must expand. The emergency pediatrician might have forced his lungs open with high doses of oxygen. Now a premature baby can get a dose of a drug that simulates the surfactant that newborn produces to open their lungs. Jake was born before that drug was discovered. Sudbury doesn’t have the capacity to handle extremely premature infants. That is why I got to know him. A helicopter was sent with a specialized NIC-U team. He was stabilized on a respirator and transported to Sick Children’s Hospital. In the intensive care unit, Jake struggled to live. In his first month, his heart stopped three times. Each time he was resuscitated. He kept going. For a hospital that sees the worst cases, Jake was not extreme. He required a lot of care. That was expected because he had to do some of his developing outside of the warmth of his mother’s womb. Eventually, Jake got stronger. He was taken off the respirator. He could breathe on his own. He needed oxygen and he didn’t have the strength to suck, but he started to gain some weight, slowly.
The NICU is a place of mixed emotions. New parents struggle to watch their babies overcome many obstacles. What is supposed to be a joyous time is often filled with tears and trepidation. Parents visit, reach their hands around the tubes and needles to touch their precious child. There is also unmeasurable love floating around the ward. Everyone—doctors, nurses, grandparents, siblings, and parents wrap their precious bundle in inspiring love.
Jake didn’t have that. He had doctors and nurses that doted on him and caressed him with their care in between alarm bells, feedings and IV bag changes. Jake became a ward of the province when he was three weeks old.
I worked in the neonatal step-down unit at Sick Kids. After the babies were stabilized and growing, they were transferred to us before they went home or to their home hospital.
When I first met Jake, he was two and a half months old. He weighed four pounds. He still required oxygen. He had a little tube that sat under his nose blowing air into his fragile lungs. He still needed to be fed from a tube that was taped to his cheek. It went through his nose into his stomach. To help him grow, we would feed him every three hours. When it wasn’t too busy, a nurse would sit in the rocking chair with him wrapped tightly in a blanket to keep him warm and hold the formula as it dripped into his stomach. He would nestle closer. When we were busy, it would drip from a pole as he lay in his incubator.
Jake reminded me of a wise old man. His skin was almost transparent and wrinkled like a grandfather. But you could brush your finger along his temple and cheek to find it as smooth as silk. And he had the longest fingers. They could be the fingers of a sculptor or a concert pianist. His hair was even a silvery gray like he had lived a long hard life. It was not long, but it was hard.
For Jake to go to his home hospital, to find a forever home, he had to be able to breathe without oxygen. He couldn’t. The doctors tried. They would gradually reduce the concentration of oxygen to be more like the air we breathe, and he would turn blue. His fingers would get cold. His eyelids would darken, and his breaths would become shallow. Then we would turn the oxygen back on and start again the next week. The energy it took for Jake to breathe meant that he wasn’t thriving. He had only gained a few ounces in the months that he was with us. And he was tired. It was a rare surprise to find him awake. He didn’t cry. But he would hold your finger. I would sit with him during the overnight shift for a time and hold his hand, sitting the rocking chair listening to him sleep. His grip was gentle.
When Jake was seven months old, the doctors had to make a decision. He was not growing. He only weighed 4 pounds 12 ounces. He couldn’t breathe without extra oxygen. He hadn’t learned to suck. He would lay in his crib dressed in a blue sleeper and covered in a hospital blanket. With premature babies, as they are infants, their development is taken from when they should have been born. Since the baby still needs some development time that he missed in the womb. Even though Jake was 7 months old, he was considered to be a 4-month-old according to his development. That meant that he should have been reaching for objects, laughing and interacting with his environment. Jake was still a tired little boy. And he had no family and limited prospects to find a new one as a special needs child.
In the end, his primary care team let Jake decide. On January 22, the doctors removed Jake’s extra oxygen and feeding tube. For Jake’s short life he struggled to live. He did not struggle to die.