Baby Gets New Heart Just Before Turning 3 Months Old, Celebrates Milestone Transplant for Seattle Children’s

At only 3 months old, Titus Sickles was brought back to life. Today, his family says they have a second birthday to celebrate: the day his new heart started beating for the first time.

“He’s a completely new baby,” said Rena Sickles, Titus’ mother. “He has a second chance at life now.”

In dire need of a new heart, Titus was listed for transplant at only 2 months old. Thirty days later, while Rena and her husband, Andrew, were leaving the hospital to go to dinner, they got a call.

“The call came and I just knew,” said Rena. “I looked at my husband and we just started crying.”

Titus lies still for his echocardiogram. An echocardiogram is an ultrasound that helps doctors to see the structure and function of the heart and to evaluate blood flow within the heart and blood vessels.

The walk from the parking lot to Titus’ hospital room was the longest walk of their lives. The nurse on the phone simply asked if they could come back to the room, and so as they made the walk back, Rena and Andrew prepared themselves for either heartbreaking or life-changing news.

“I didn’t want to get my hopes up,” said Rena. “I knew if something was wrong I’d know right away because there would be a million doctors and nurses scrambling in and out of the room.”

But when they arrived, there wasn’t a flurry of doctors and nurses, just one.

“We just accepted an offer on a heart,” the doctor said.

Those words took their breath away.

“I had to hold on to the side of the crib,” said Rena. “It was an out of body experience. I couldn’t believe it was real.”

A journey to a new heart

Rena found out her baby boy would be born with a congenital heart defect 18 weeks into her pregnancy. The diagnosis caught her off guard.

“I couldn’t understand why it happened to us,” said Rena. “Our three other boys had been perfectly healthy, and so it was a complete surprise.”

Titus was born with a severe congenital heart defect called double outlet right ventricle.

The only thing the family could do was wait for Titus to arrive and hope for the best.

On Jan. 8, 2018, Titus entered the world. His heart was weak and he was very sick. The defect was more severe than doctors had anticipated. He was born with a severe congenital heart defect called double outlet right ventricle, which included a large hole in his heart causing too much blood to pump into his lungs.

His heart was failing from day one.

The family had prepared for Titus to undergo three surgeries soon after birth to repair his heart, but they received devastating news. Doctors believed his heart was too weak to tolerate repair, so he was transported to Seattle Children’s where they learned about the possibility of heart transplant. The family only packed enough clothes for about a week, but doctors at Seattle Children’s told them they wouldn’t be leaving. Titus needed a heart, and soon.

From there, it was a race against the clock.

“There were really challenging days,” said Rena. “There were days I wondered if he was going to make it to transplant.”

While Titus was waiting for a new heart, he was also deteriorating.

While waiting for a heart transplant, Titus’ heart kept deteriorating. The extra blood pumping into his lungs made it a struggle to breathe.

“His heart muscle was very weak,” said Dr. Lester Permut, a cardiothoracic surgeon at Seattle Children’s, who performed Titus’ transplant. “Titus couldn’t handle the extra blood flow going into his lungs. Two weeks before his transplant, he underwent an operation to restrict the blood flow which allowed him to survive until a heart became available. He was in a very fragile state. He probably couldn’t have survived another month.”

“Today is the day”

On April 7, 2018, Titus was taken into the operating room to receive his new heart. One day shy of turning 3 months old, it was a milestone for both Titus and the hospital. Titus was the 200th heart transplant performed at Seattle Children’s.

A few hours after going into surgery, the Sickles heard from the care team.

“Your son has a new heart in his chest and it’s beating,” said the nurse.

The words brought a rush of relief to Rena. Her baby was going to be okay.

Hours later, Titus was back by Rena’s side with a new heart. All she wanted to do was hold her precious baby boy.

Breaking records

When Permut walked into their room to check on Titus and the family, Rena was overwhelmed with gratitude.

“I got the chance to shake his hand, tears flowing down my cheeks, and thank him for saving my baby’s life!” said Rena. “He was so humble and said, ‘It wasn’t me. The cardiologists, doctors and nurses saved his life to get him to transplant. I just had the skill to put the final part of the plan into action.’”

Titus’ recovery was remarkable. Only three days after his transplant, he was moved out of the Cardiac Intensive Care Unit (CICU). A week later, the family was preparing to be discharged. Only 11 days after his transplant, he was leaving the hospital.

“I wasn’t sure we’d ever see that day!” said Rena.

In a moving Facebook post, she wrote, in part:

“I had dreams of Titus lying on an operating table, chest open and empty, but I learned to pray through fear. I placed my baby into the hands of a surgeon who would literally have to end his life and attempt to start it again, all while having faith in huge miracles. Now here we are. We get to take our baby home!”

Home, at least for the next few months, will be close to Seattle Children’s, but the family is happy that means they get to be outside the walls of the hospital for the first time in 59 days.

Words of gratitude

Titus poses with his heart pillow, signed by his care team with messages of support.

For Rena, this experience has opened her eyes. Without organ donation, her baby boy wouldn’t be alive today.

“He’s been reborn,” she said. “You don’t want to think about your baby passing away, but for the parents who chose to donate their child’s heart and give my son a second chance at life in an incredibly vulnerable moment, it’s remarkable. We witnessed a miracle. There aren’t words to express gratitude that deep.”

Rena hopes to one day meet the family who saved their son. In the meantime, she’s putting pen to paper and writing a letter to the family.

“You would never know what he’s been through by just looking at him, and it’s thanks to you.”

To learn more about organ donation visit Donate Life.