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Archives Second time in isolation: Transplant and then COVID

May 19, 2021

By Darcy Fargo
Editor

CANTON – When Matilda Smith was only six weeks old, a liver transplant saved her life and cast her and her family into a period of isolation. Despite being thrust back into isolation by the pandemic, the Smith family remains full of faith and hope.

Kelly and Tyler Smith welcomed their baby girl, Matilda, into the world shortly after moving to the North Country.

“We had just moved her from Montana,” Kelly said, noting the couple moved her when her Tyler accepted a position as a professor at Clarkson University. “We didn’t know anyone.”

Matilda showed signs that she wasn’t well very early in life.

“She was about a week old,” Kelly said. “That’s when she started getting sick. I kept bringing her back to the doctor, back to the hospital. She was lethargic and not eating well. Things just didn’t seem right.”

After a blood test alerted physicians that Matilda’s liver wasn’t functioning properly, the infant was immediately transported to Syracuse for further medical evaluation and treatment.

“When we got to Syracuse, they ran more tests,” Kelly said. “They told us ‘she is so sick, she’s probably not going to make it. If she does make it, she’s going to need a liver transplant.’”

Matilda was then moved to Mount Sinai Hospital in New York City.

“She was put on life support,” Kelly said. “They didn’t think she was going to make it. She had swelling in her brain and a number of other issues. That was day 10 of her life. It was hard! We had her baptized that next day, and we prayed.”

Those 10 days were followed by several difficult weeks,

“After five weeks waiting in the hospital, she was so sick,” Kelly said. “She had to be resuscitated more times than we can count. She definitely went to heaven and came back multiple times. We just had to watch it happen. My husband was talking the other day about the fact that people don’t understand what it’s like to be watching your child die. Matilda was in the (Pediatric Intensive Care Unit), because once you leave the hospital, you can’t go back to the (Neonatal Intensive Care Unit). We watched and overheard multiple children pass away and listened to parents experiencing that. It was an open room. They weren’t private rooms.”

Kelly said she and Tyler were extremely close to God during this time.

“Both my husband and I look back, and we know it was a really beautiful time in our lives,” Kelly said. “There was a lot of suffering and sadness, but I felt so close to God. It was like we were in a place between heaven and earth. She was in that place, moving between heaven and earth. We could feel the presence of God in an extraordinary way. I knew that if I went to those dark thoughts of asking the questions of ‘why,’ I would spiral and go to a dark place. I didn’t allow myself to do that. There were days that were hard – harder than others, when it just felt like too much. For the most part, though, I consciously tried to be positive and tried to celebrate. I thought, ‘I don’t know how long we’ll have with her. It could be a day; it could be a week. As long as we have her, I want to celebrate her life and make best of it.’ I read to her, sang to her. We weren’t always allowed to hold her, but I could stand by her, hold her hand and pray. We prayed a lot. We asked a lot of others to pray for us. Sometimes I couldn’t think of the words. That’s where memorized prayers are really handy. I couldn’t put together my thoughts, but I could say an Our Father or Hail Mary, and I could let other people pray for me. I could feel the gift and grace of prayer lifting me up. It wasn’t easy, but the only thing I had to do was love. I didn’t have a toddler to care for. I didn’t have dinner to make, clothes to wash. I had nothing to do but love my daughter.”

While Tyler and Kelly stayed by Matilda’s side, they had to arrange care for their son, Parker, who was two years old at the time.

“He couldn’t be with us,” Kelly said. “We flew him back to Montana to be with family. That was the best place for him to be mentally and physically. It’s hard to think about the fact that we had two healthy children one day, and the next day, I had neither of them with me. That was difficult.”

All Soul’s Day arrived, and Kelly attended Mass. She also spoke to the priest about Matilda receiving the sacrament of the sick.

“She was dying,” Kelly said. “They were saying it was going to be any day. While she was getting the sacrament, the phone rang. There was a liver. The donor was a two-week old in Missouri. A team flew and got the liver and brought it back. Matilda had surgery the next day.”

Just getting a liver was a miracle of sorts, Kelly said.

“People don’t want to think about organ donation when they’re dealing with an infant loss,” she said.

The surgery was successful, but the family had to remain in New York City for four more months to attend post-surgical appointments.

“Even after we got back to Canton, we had to drive to New York City once a month for labs and to be checked by a doctor,” Kelly said. “As she got older, it was every three months. Then every six months. Now, it’s once a year, though she has labs locally pretty often.”

Once home, the family had to take precautions to protect Matilda due to her weakened immune system.

“The first three years of her life, we did the social distancing thing,” Kelly said. “She didn’t leave the house except for medical appointments, people coming into the house had to wear masks and immediately shower or wash up. My son came home from preschool, and I’d immediately bathe him. Her immune system was non-existent in the beginning. If she had a fever for any reason, we had to be back in New York City for a liver biopsy. We wanted to make sure she didn’t get the flu or any other type of sickness.”

Gradually, Matilda’s medical team eased restrictions as her immune system strengthened. She was eventually cleared to attend school.

“I was like, there’s no way,” Kelly exclaimed. “How can we keep her isolated for three years and then she can go to pre-school? But I trusted (the medical team). It was a way to build up her immune system. That first year, she was sick every week. She had her tonsils and adenoids out, and that helped a lot. She was still sick a lot that first year of kindergarten, so the transplant team suggested giving her another year to catch up. She did another year of kindergarten. Last year, she was in first grade, and she wasn’t sick at all.”

Then, the pandemic began.

“We’re following the guidelines the transplant team is giving us, and we’ve been completely isolated,” Kelly said. “We don’t go to grocery stores, and no social gatherings. My husband is teaching remotely. I’m teaching second grade at Canton remotely.

“At first, we were like, ‘Ok. We’ve already done this. We’ve got this. We already knew the techniques and how to live like this. It was also daunting because we know the loneliness of it. And our kids are older, and they want to be with their friends. We have to explain it to them in a way they understand, but it’s hard when they see other kids out playing or doing things together. We’re trying not to scare them, but we’re making sure we explain that the decisions other families make aren’t right for our family.”

The pandemic has, however, increased options for individuals in isolation.

“We can still celebrate Mass together as a family and participate online,” Kelly said. “It’s not the same, but it’s a close second. If we didn’t have the option of participating in Mass online, we wouldn’t be able to go. It doesn’t matter how much I want to be there and want to be in the building experiencing that with community, it would not be safe for my family. Mass online gives us an opportunity to continue on with our faith and stay connected. Father (Bryan) Stitt doesn’t see me every week, but I see him.”

Religious education is also offered in an online format in Canton.

“It could’ve been offered in person for those who could go, and she would’ve had to miss that year,” Kelly said. “Opening it up as an online program makes it accessible to everyone.”

Kelly asks community members to be vigilant following pandemic protocols and encourages any eligible person to get vaccinated.

“In order for her to be protected, everyone else needs to have the vaccine,” she said. “We have to work as a community to protect people who need extra protection – people with suppressed immune systems. There have always been controversies about vaccines, but the reality is my family won’t be able to go back into the world until our community is vaccinated.”

To read more of Kelly’s story, visit her blog, cloudydaygray.com.

 

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