Maddy and Rinken are almost inseparable. The two play together whenever they can, which is nearly every day. The two girls have such a special bond you would think they were sisters. However, they only met for the first time a few months ago. What brought them and their families together is as unique as their bond: they are both waiting for one thing – a new heart. Maddy and Rinken are both patients in the Cardiovascular Care Center, the Cardiovascular Intensive Care Unit (CVICU) at Children’s Minnesota.
Twenty-one-month-old Rinken’s road to Children’s Minnesota has taken many turns. She was born at the Children’s Hospital in Omaha, Nebraska in October 2020 with hypoplastic left heart syndrome, a complex and rare condition. She underwent her first open-heart surgery at just 8 days old and her second at 7 months old. In addition, there were countless trips between their family’s home in Brookings, South Dakota, and the hospital for issues that arose with Rinken’s health.
At the beginning of 2022, Rinken was back in the hospital in Omaha with heart failure and was ultimately placed on the heart transplant list. In April, she was transferred to Children’s Minnesota’s Minneapolis hospital and a familiar face – Dr. Adam Putschoegl, who had previously worked at the hospital in Omaha before joining our Heart Failure and Heart Transplant team.
It didn’t take Rinken long to thrive in her new surroundings. “The room is big and private. We can fit all Rinken’s toys and stuffies. She can leave the room and play or go and watch live shows in Star Studio. She can just be a kid,” described Emily.
The first sign that something could be going on with Maddy’s health was in October 2021. Her mom, Miguella, noticed her daughter had a cough that wouldn’t go away and got sick easily. They went to a lung specialist who recommended a CT scan that showed Maddy’s heart was a little bigger than it should be.
Further testing revealed the diagnosis – restrictive cardiomyopathy. It’s the rarest of the three main types of cardiomyopathy in children. The condition means the chambers of Maddy’s heart have become stiff, making it harder for her heart to fill with blood between heartbeats.
“At first, the diagnosis was challenging to accept. But at the same time, we were relieved to know what was going on and see Maddy getting the care she needed,” remembers Miguella.
At first, Maddy was cared for at the Mayo Clinic in Rochester, where doctors initially determined she needed a heart transplant. After a couple weeks, the family asked to transfer to Children’s Minnesota to be closer to their home in Buffalo, Minnesota, and so Maddy could be at a hospital focused exclusively on caring for kids. Maddy arrived in April 2022. Miguella says she’s noticed a night and day difference in her daughter.
“This is a totally different girl. She gets to be a typical 6-year-old. We’ve played Bingo and got to see princesses in Star Studio. The nurses and doctors on the floor are also incredible. Everyone in the hospital caters to the kids really well,” said Miguella.
On the journey together
Since they arrived at Children’s Minnesota around the same time, it didn’t take long for Maddy and Rinken to meet. They’ve been like sisters ever since. Rinken has shown Maddy the heart surgery scar on her chest. Maddy has been like a big sister to Rinken. When they go to Star Studio for live shows, they almost always go together. The connection and mutual support extends to their moms too.
“We’re there for each other on good days and bad days. The days we get to celebrate and the days we have setbacks,” said Emily.
Maddy and Rinken also share the same care team, including Dr. Putschoegl. “The communication from the care team is wonderful. The transfer here has been so smooth. It’s like destiny.” said Miguella.
The girls also made an impression on the staff.
“I love seeing the joy in both Maddy and Rinken’s faces each time they get to interact. It’s been fun to see them form a bond and hear the laughter when they are together. It’s such a delight to be in their rooms on a daily basis and we all look forward to seeing them outside the walls of the hospital where they can continue to thrive,” said Dr. Putschoegl.
After almost five months, Maddy’s wait for a new heart has ended. On the morning of August 15, she successfully underwent transplant surgery after a donor heart became available. Her recovery is going well and she was discharged home only seven days later.
Two weeks later, Rinken received her donor heart as well and is expected to be discharged soon.
Both families look forward to, one day, celebrating a new life and bond outside the hospital.