On January 6, Marliee celebrated her first birthday in the place she’s lived since she was 4 months old: Children’s Healthcare of Atlanta Heart Center. On her birthday, she was allowed the precious treat of seeing her two older siblings face to face for only the second time since she was diagnosed with dilated cardiomyopathy and congestive heart failure.
Marliee, her 6-year-old brother, Rory, and 11-year-old sister, Randi, were all born in the same month, which makes for a very busy December and January for the family, according to their mom Tiauna.
“We don’t combine Christmas and their birthdays,” Tiauna said. “We celebrate them each individually. It’s a lot, but they’re really good kids. They deserve it.”
In fact, the entire past year has been a lot for this family. Tiauna was furloughed from her job in March due to the pandemic. In April, she and her husband Christopher noticed their newborn was having trouble feeding and breathing rapidly. They had no idea what the next nine months would have in store for them.
It involved Marliee being in the hospital full-time, receiving a Berlin EXCOR left ventricular assist device (LVAD) and being listed for a heart transplant. Meanwhile, Tiauna entered an accelerated program at Flatiron School to become a software engineer, while her husband worked nights at his job. They took turns being with Marliee at the hospital, while sharing the homeschooling responsibilities for their kids who were learning virtually during COVID-19.
The Berlin EXCOR ventricular assist device gave Marliee the amazing opportunity to live a relatively normal life while awaiting a heart transplant, but it meant months of further separation for the family.
“The device ensures that our patients receive normal blood flow, despite how sick their hearts may be,” said pediatric cardiologist Chad Mao, MD. “This frees them from most, if not all, of their heart failure symptoms, allowing them to play and live relatively normal lives while awaiting their heart transplant. At this time, unfortunately, patients do have to remain in the hospital while supported on this pump.”
And so, the family anxiously watched and waited, counting down the days while the kids stayed in touch with their baby sister on FaceTime. Then, on a Sunday evening, Tiauna and Christopher got the call they had been praying for. Marliee got her heart transplant on February 1, the first day of American Heart Month. Ideally in a few weeks, the family will have a baby in their home again.
“I was so excited and happy for my child,” Tiauna said. “It was the greatest day of our lives, but I also can’t get the donor mom out of my mind. I’m working on writing her a letter, but how do you thank someone for what they’ve done for you? We will think about them literally every day for the rest of our lives. I will never forget their child. We’re going to ensure Marliee does great things in her life and truly honors the incredible gift she’s been given.”
Tiauna said Children’s Cardiology has become family to her. Because of the team’s loving support, a very hard situation was made somewhat easier to bear.
They don’t treat you like just another patient. They treat you like a member of the family,” Tiauna said. “Everybody needs to know how great this place is. I can’t put into words the gratitude I feel for Children’s Cardiology and Marliee’s whole medical team. Again, how do you properly thank someone for saving your child’s life?”
Tiauna said this heart journey with Marliee has taught her family to appreciate life and never, ever give up. Marliee inspires all of them to keep going.
“You will have days that are very scary when you’ll be asking, ‘Why is this happening?’ Tiauna said. “But regardless of what it looks like and feels like, don’t give up. Hopefully on the other end, your child is healed or in a place to have a better life. And don’t stop living just because your child’s in the hospital. Don’t stop going on dates with your husband or getting together with your girlfriends. Your child won’t be good if you’re not good. We do pray in our family, and if that’s something you do, continue to pray. Don’t lose faith because there is sunshine on the other side of the storm.”
On the same day as Marliee’s heart transplant, Tiauna was called back to her job. She’s already alerted her colleagues that she will need some special time off when her baby girl comes home after almost a year in the hospital. Randi has alerted her mom that she’s going to need plenty of baby-holding time, too.
“I just look at her in awe. She’s gone through so much and yet she still puts a smile on her face and is her silly, loving self,” Tiauna said. “People ask me how I’m doing, and I just say, ‘Look at my child! She’s the one going through things that no baby should have to.’ I’m just here to love and support her and care for her. She’s phenomenal to me. Right now, I’m so ready to get her home and love on her.”