13-year-old celebrates one year with a new heart
It was just over a year ago that Sarah Robinson frantically put her head on her daughter’s chest and heard nothing where a heartbeat should’ve been.
After years of surgeries and repairs, her 12-year-old’s imperfect heart had stopped working.
“I just remember giving her CPR and thinking this was it,” Sarah remembered.
By the time Maren reached C.S. Mott Children’s Hospital, she’d had three cardiac arrests.
It was the moment the family had been dreading Maren’s whole life — the time when she’d finally need a new heart to live.
After a tumultuous touch-and-go journey, Maren’s second chance ultimately came through the gift of organ donation. And today, the 13-year-old is celebrating her one-year heart transplant anniversary and back to her “fun, silly, goofy, happy self,” her mom said.
“We have her back. It’s a complete miracle,” Sarah said. “We are so grateful to the doctors and nurses at Michigan who took such good care of her and were always so patient and kind. And we are beyond grateful to the donor family. I think about them every day.”
Maren was among 22 pediatric heart transplant recipients treated by the Mott Congenital Heart Center in 2020, a record number for the hospital, which performed 10 such procedures in 2018.
“We are grateful to have a team at Michigan whose combined expertise helps ensure the best outcomes for patients like Maren,” said pediatric cardiac surgeon Ming-Sing Si, M.D., who performed the transplants.
“Our pediatric cardiologists, along with our transplant, surgery and intensive care teams work together to provide the best care before, during and after surgery in order to give patients the best chance at a successful transplant.”
Mott pediatric cardiologist Kurt Schumacher, M.D., said that in cases like Maren’s, care teams have to be prepared to respond quickly to the unexpected.
“So many people are involved in helping a patient be as healthy and strong as possible to undergo a successful heart surgery,” said Schumacher, who is the medical director of the pediatric heart transplant program at Mott.
“It was a remarkable experience to see our teams send so many children home with new hearts. This will allow them to return to a more normal childhood, go back to doing the things they love and make new memories with their families and friends.”
An imperfect but fierce heart
Maren was diagnosed pre-utero with a congenital heart disease called hypoplastic left heart syndrome, which is when the left side of the heart does not develop properly while the baby is in the mother’s womb. In babies with this condition, the left side of the heart is underdeveloped and cannot pump enough blood to meet the body’s needs.
The diagnosis meant Maren would need surgery right after birth. The Robinsons, who lived in New Mexico at the time, opted to get the surgery in Washington D.C. where they had family support.
Because of complications after her surgery, Maren spent nearly five days on heart and lung support via ECMO as a newborn and also needed ventilator support to breathe. She was hospitalized for four months after birth and underwent two more open heart procedures before turning three.
“She was pretty sick. Very slowly, but surely, she made her way through,” Sarah said.
Because of neurodevelopmental delays, Maren didn’t walk until she was two or talk until she was three and a half. But one strength always shone above all — personality.
“She has always been so happy and smiley, as a baby and even now — no matter what she’s going through,” Sarah said. “She’s just a hilarious kid. What she lacks in physical and cognitive skills, she more than makes up for it with her sense of humor. She loves laughter and being social and is just always smiling. Even when she’s sick, she’s happy. She never complains.”
Sarah’s husband Randy had gotten a job transfer so they could stay in D.C. full-time during Maren’s care along with their older son Henry, then four and who is now 17.
But when it was time to transfer again 10 years ago, the family researched all of their options and chose Michigan because of what they learned about the congenital heart program at Mott.
“The hospital was our number one factor,” Sarah said of moving to Saline. “It was an amazing program. It felt right and we just knew it was where we needed to be.”
Bringing Maren back
Maren continued care with the Mott congenital heart program throughout childhood and by age seven was doing so well she no longer needed regular visits. Maren learned to ride a bike, which became a favorite activity, and enjoyed school.
The family also had more opportunities to travel, including a Make-A-Wish trip to Disney World.
“After that rough start, it was so incredible to see her grow and learn and to watch these milestones being met,” Sarah said. “We were just enjoying life being a family.”
The Mott team followed the family’s preference to take a conservative approach to care. There were efforts to shock her heart back into normal rhythms when she experienced arrhythmia, but fixes were temporary.
“Since she was born we knew that we could do these surgeries but that the next step would be a transplant,” Sarah said.
And that day came in November 2019, with what started as an ordinary moment in the kitchen getting ready for church, as Maren ran around the living room with her little sister, Emmy, now 8.
“I’ll never forget it. She suddenly stopped and put her hand on her heart. Her eyes got really big and she went ‘woah,’” Sarah remembered.
Feeling nauseous, Maren started to head toward the bathroom, but then collapsed.
After arriving at the hospital, she was placed on ECMO and it was unclear what kind of brain function she’d have.
“We didn’t know if we wanted to put her through any more, not knowing what her quality of life would be,” Sarah said.
But they got their answer as Maren cracked a smile and even a laugh one day with her mom and nurse. And again, as Sarah and Emmy were at Maren’s bedside debating how to handle a mouse situation at home. Emmy offered a somewhat “wild and creative” solution that drew delighted laughter from Maren.
“We both turned to look at her,” Sarah said. “She was laughing appropriately at the story. That’s when this switch went on. We knew Maren was in there. Her silly, goofball personality was still there.”
Over the next few days they heard more of the familiar laugh, often during snippets of Maren’s favorite shows “Parks and Recreation” and “The Office.” Slowly, her witty and sarcastic comments returned too.
“We said ‘she’s fighting so we’ll follow her lead,’” Sarah said. “If she’s coming back from this then we’re going to help her however we can.”
Over the next month, through physical therapy and care, Maren’s health began to improve and she got stronger.
New heart, new lease on life
Just a little more than two weeks after Maren was listed on the transplant list, a doctor tapped on the hospital room door, motioning for Sarah to come out.
She had big news.
“She told me ‘we found a heart for Maren.’ I couldn’t believe it,” Sarah said. “Within five seconds, I had every emotion — surprise, happiness, sadness for the other family. I was crying.”
She told Maren her heart was going to be fixed that night. “Are you kidding me?” Maren exclaimed happily. But as she settled for bed, she suddenly turned and asked her mom “I’m getting a new heart tonight?”
When her mom replied yes, Maren said “good because this heart sucks.”
“I told her I liked this heart,” Sarah remembered. “It gave you 12 years when it wasn’t supposed to last a few days.”
The Mott heart surgery team performed Maren’s transplant on Jan. 6, 2020. After a couple of months of recovery, she was able to come home just before the COVID-19 pandemic shutdown.
Today, the eighth grader is enjoying virtual school, walking on her own and playing with her guinea pigs and siblings.
And of course, she’s back to sharing laughter with everyone around her.
“The whole experience is still overwhelming,” Sarah said. “Maren is amazing and I’ve learned so much just being her mom. It’s incredible the things she teaches us each day. Her being here is just such a gift and a blessing.”
This story first appeared on the Michigan Health Blog.