A year ago, baby Titus Sickles was fighting for his life. In need of a new heart, doctors didn’t know if he was going to make it to transplant. Patiently and desperately, the family waited on the transplant list, watching as their newborn baby’s heart failed before their eyes.
“I knew he wasn’t doing good,” said Rena Sickles, Titus’ mother. “I totally lost it emotionally and said, ‘He’s sick of fighting and I can’t make him do it anymore. So, when he’s ready to go, we’ve just got to let him.’ That’s a really hard thing to to be okay with.”
Today, Sickles said you would never know by looking at Titus what he’s been through. He’s is a happy, healthy 1-year-old thanks to a gift Rena says she can never repay – a new heart.
“There are no words to express how grateful we are,” said Sickles. “It’s a miracle he’s here today. We make the most of every moment we have with him because we know they’re not promised.”
Sickles says every smile, every laugh, every day she has with her son is thanks to the donor family who selflessly said yes to organ donation, and to the doctors and nurses at Seattle Children’s who helped Titus make it to transplant.
Born with a very sick heart
On Jan. 8, 2018, Titus came into the world with a failing heart. He was born with a severe congenital heart defect called double outlet right ventricle, and a large hole in his heart that caused blood to pump into his lungs. Titus’ condition was much worse than doctors had anticipated, and so he was transported from a hospital near the Sickles home in Toledo, Washington to Seattle Children’s, hours away.
Titus’ situation was dire. Each passing day was a race against the clock.
At only 2 months old, Titus was listed for transplant. He needed a new heart, and he needed one fast.
The day before Titus turned 3 months old, the family got the most important phone call of their lives. A nurse was on the other line. She asked Sickles and her husband to come to Titus’ hospital room. Her voice gave nothing away. As they made their way through the hospital, they prepared themselves for every possible outcome. When they arrived, their doctor was waiting.
“We just accepted a heart,” he said.
On April 7, 2018, Sickles placed her son into the hands of a surgeon. She said the gravity of that moment was immeasurable.
“They would literally have to end his life and attempt to start it again,” she recalled. “It’s something no mother ever wants to imagine.”
Hours later, they received good news. The surgery was a success. Titus had a new heart beating in his chest. He was Seattle Children’s 200th heart transplant.
One year later
One year later, Titus is thriving. He lights up a room with his infectious smile, and loves to dance.
“He has certainly come a long way,” said Dr. Lester Permut, the cardiothoracic surgeon at Seattle Children’s who performed Titus’ transplant. “My hope and expectation is that he will grow up to lead a full and active life, something that would not have been possible without the transplant.”
The family is still overwhelmed with gratitude for the donor family who saved Titus’ life. Sickles says she thinks of their family every day.
“Something we really struggle with is the fact that someone else had to lose their baby,” said Sickles with tears in her eyes. “I can’t fathom what they went through. I didn’t have to bury my baby because they buried theirs instead.”
Sickles says they are going to do everything in their power to make sure Titus’ heart lasts as long as possible.
“We owe it to them,” she continued.
One day, Sickles hopes to thank their donor family in person. For Titus’ 1-year birthday, the family put together a special photo shoot. They dedicated it to the donor family.
“I understand if it hurts too much, but one day I hope to thank you in person, and if you want, for you to hear your child’s heart beat again,” said Sickles.