Nathan Hutchinson just said his first word, 'Up'
In March, two-year old Nathan Hutchinson stopped breathing in his Courtice, Ont. home. He was transported to SickKids Hospital ICU, an all-too-familiar place for Nathan and his family, in the midst of a pandemic. He would remain there on and off until mid-May.
Nathan was diagnosed with a rare heart condition, Supracardiac Total Anomalous Pulmonary Venous Return, at birth. Since then, he has spent almost half his life — 300 days — in the hospital where he has had two open-heart surgeries, spent four days on life support, and received a double-lung transplant.
The life-saving open-heart surgeries resulted in progressive Pulmonary Vein Stenosis, a second rare heart condition.
“We were just basically putting Band-Aids, with procedures and heart catheterization building, and it wasn’t working. It was actually progressing faster,” his mother Crystal Costante told The National Post.
The only treatment option was a double-lung transplant, which Nathan received at 10-months-old after only a week’s wait. The risks were high but he survived the surgery and became only the seventh infant in Canada to receive a double-lung transplant.
But, instead of getting better, Nathan experienced postoperative complications, keeping him in the SickKids ICU from his transplant date of August 26, 2019, until March 18, 2020. By March 25, he was back and remained in and out of intensive care until May 11.
It was not only the stress of having a child with intense respiratory needs weighing on the families mind but what that meant with the rise of COVID-19.
According to Global News, the first presumptive case of coronavirus in Canada was identified on January 25, 2020, but Ontario did not declare a state of emergency until March 17, 2020. Other provinces followed suit, shutting non-essential services and switching students from public or private to virtual schools. People began to clear grocery store shelves, buy masks and self-isolate at home.
“When schools closed down, we were in the ICU and we were panicking because we just really wanted to get home,” Costante said. “We didn’t feel like it was safe for Nathan to be in the ICU, because this is the place where they would take kids if they had COVID and they needed to be on a ventilator.
“We were scared”
On April 28, 2020, the family’s fears were realized with the declaration of an outbreak in the hospital. One patient on the hematology/oncology floor tested positive for the virus as well as their parents and members of their care team. A secondary patient on another floor also tested positive.
Nathan’s parents, Costante and Justin Hutchinson, could see how quickly infections were spreading in a hospital even with precautions. Costante said that the ICU rooms have four to six bed spots in one shared room, separated by red tape on the floor and a curtain. As careful as everybody was, she said Nathan was constantly getting sick.
Usually the ICU allows for two caregivers but with the rise of COVID-19, it was down to one.
“His father and I were always there at the bedside from the moment he was admitted (but) no family came. No grandparents, no nothing,” said Costante.
The parents decided it was safest to stick with one of them for the entire stay. Because the family live an hour away, they made the choice for Costante to remain in the hospital with Nathan while husband Justin stayed home.
It would be 82 days until he saw his son again.
“It was very difficult and hard. FaceTime is not enough because it just makes people upset that they don’t physically get to be there and it’s lonely because you can’t go anywhere and you’re stuck to a room shared with others with masks,” said Costante.
According to SickKids website COVID-19 policy, two parents may now join an in-patient child but only one parent may accompany their children to appointments.
But it was not just the isolation that made these stays difficult, the hospital began to shut down retail stores and place restrictions on food options.
“It was becoming difficult to even eat when we were in the hospital,” said Costante.
After his discharge from hospital on May 11, Nathan moved into Holland Bloorview Kids Rehabilitation Hospital so he could keep up with physical therapy. By now, the family had decided to try and reconnect but were unable to because of Holland Bloorview’s strict COVID-19 policy, which only allowed one parent per 24-hour period.
Costante said they requested an exception be made for reconnection but were unsuccessful.
It's lonely and it's difficult but we get through it because we have toNathan's mother Crystal Costante
Holland Bloorview says on its website that, as of August 17, it is only allowing physically distanced visits of up to six people, including the child, in designated areas of the hospital.
The David Foster Foundation assisted the family with expenses including food, mortgage, car payments, gas and cell phone bills while Nathan fought to recover post-transplant. “They took care of all the financial things we couldn’t and helped keep our family together,” they said. “We couldn’t have gotten this far without them.”
On June 15, they all moved back home, where Nathan is doing well. He loves watching Shrek and just said his first word, “Up.”
But they are still adjusting to post-transplant life in the middle of a pandemic with a virus that targets respiratory systems. Nathan is receiving most of his follow-up care virtually, with the exception of regular blood draws, and staying out of the hospital as much as possible.
“We would probably be self isolating anyways because he is so fragile, but I don’t think we would do it to this extreme,” his mother said.
Unlike most who are experiencing bubbles for the first time, Nathan has yet to meet a lot of very important people — his extended family.
“They help us by dropping things off on my doorstep, if I need something because I can’t really go out. I can’t do anything unless I desperately need anything. It’s hard that he is stuck to the four walls inside my house unless I take him for a walk,” said Costante..
She is looking forward to their first Christmas at home as a family and for Nathan to eventually play with other children instead of keeping distant. “He spends his days chasing his dog around the house and I spend my day chasing him around with his vent!”
In a recent Instagram caption, Costante wrote, “Today was another first. We made arrangements with our local NoFrills to pick up pumpkins safely … He was so happy, he’s never been in a store before and he was mesmerized by the lights, people and beeping.”
“It’s lonely and it’s difficult but we get through it because we have to. We have to make it out of this pandemic and hopefully one day we can really start experiencing life because that’s why we went through this transplant journey,” Costante said.