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‘Our family is whole again,’ mother says after one-year-old son gets new heart
Published Monday, March 18, 2019 6:47PM EDT Last Updated Monday, March 18, 2019 7:37PM EDT
A one-year-old baby is set to return home after a 100-day journey to get a new heart.
A family from Gananoque, a town west of Kingston, has packed their lives back into their suitcases for what they hope is the last time.
For more than 100 days, Lucas Tanswell, his three-year-old sister and their parents have called SickKids Hospital and the Ronald McDonald House home as they anxiously awaited for a new heart to become available.
“There was a lot of time that we weren’t sure we were going to be leaving with Lucas,” the young boy’s mother, Anne-Marie MacKenzie, told CTV News Toronto.
“I don’t know it’s really hit us yet,” his father Milton Tanswell said. “It keeps getting more and more real as it goes on.”
Lucas Tanswell appeared healthy until June 20, 2018 when his breathing slowed and he wouldn’t nurse or come near his mother.
The couple took him to their family doctor around lunchtime that day, thinking that their son was just feeling under the weather. However, their doctor recommended they go to an urgent care clinic immediately.
Lucas was then airlifted to Kingston General Hospital.
Speaking with CTV News Toronto in early January, Milton Tanswell said he knew something was wrong as soon as he saw the doctor’s face.
“You could tell this was not just (that) he has a cold or something,” he said. “To me, it felt like we were there for a total of five minutes before we were running down the hallway with him on a stretcher. Things just went wild from there.”
Lucas was diagnosed with a rare condition that affects his heart muscles, making it difficult for his blood to pump throughout his body. He had open heart surgery on Oct. 10, 2018 to receive a Berlin heart, a ventricle assist device that pumps air into his heart.
But the pump was only a temporary fix. Lucas needed an organ donor.
The family was living at Ronald McDonald House as they waited for a life-saving phone call – which came on Jan. 28, at 11:30 a.m.
Milton Tanswell said he was the one who answered the phone that day.
“I remember spending weeks preparing for this call,” he said. “The call came in and I dropped to my knees.”
“I was in shock. Anne Marie looks at me and thinks the worst because I wasn’t talking and was crying.”
The family rushed to SickKids, but a winter snowstorm slowed down the process. The heart was not in Toronto and needed to be flown into the city.
That day, between 15 to 20 centimetres of snow was expected to fall in the Greater Toronto Area.
Milton Tanswell said the family waited for 10 hours before Lucas was taken to surgery, and even then they were told it may not be possible to do the transplant.
The young boy was given his new heart on Jan. 29.
The family said that Lucas is the “absolute success case” for a heart transplant. Three days after the surgery, he was sitting up and laughing. Ten days later, his parents were able to take him back to Ronald McDonald House.
“It could not have possibly gone better,” Milson Tanswell said.
“As soon as we left the hospital he just was smiling. He’s always been a very happy baby from day one, but it’s just been nonstop,” Anne-Marie MacKenzie said.
The family will be leaving Ronald McDonald House Monday evening after spending a total 167 days living in the facility.
Lucas will need to visit the clinic at SickKids weekly for several months to ensure he is in good health and will be closely monitored until he is 18 years old. He will also need to take anti-rejection drugs for the rest of his life, but his parents say they are just thankful that their son is going to be able to grow up.
“He is going to go to school. We are going to see him ride a bike. He is going to fall in love,” his mother said. “We will contact the donor family, and hope that they will want to speak with us as well, to give them thanks and to let them know that our family is whole again.”
“That gift is the biggest thing you can ever receive. We will make sure (our kids) know it as well.”