The Schuetz family, Christina and Evan and their children Lillian and Rowan. The purple flowers are in Sylvia’s memory.”Sylvia’s color is purple,” Christina said. “Every single person who came to her celebration of life service wore purple. This bouquet of wooden flowers was given to me by my best friend, Kristina, after Sylvia passed. She knew I’d get a lot of flowers and wanted me to have a bouquet of purple ones that would never die—just like Sylvia’s legacy.” Photo provided by Ericka Mae Photography

BY PHIL CUSTODIO
Clarkston News Editor
Christina Schuetz of Clarkston has a mission – be the kind of woman her daughter Sylvia would have been.
“I believe she would be a woman who wanted to give her heart to people, figuratively, as she did literally to the CHD (Congenital Heart Disease) community,” Christina said. “I want to be that kind of woman, to be a walking Sylvia on this Earth.”
She moved to Clarkston with Sylvia, husband Evan, and daughter Lillian from Sterling Heights in July 2016. Three weeks later, Sylvia was hospitalized at Mott and required one of the most difficult pediatric open heart procedures possible.
Her left ventricle did not recover and she waited for a transplant for three months on life support before she passed away just a couple days shy of 10 months old on Oct. 11, 2016.
“Since Sylvia passed away, one of my major goals as her mom is to keep her legacy alive and one way I strive to do that is to bring awareness and funding to the CHD community,” Christina said. “Feb. 7-14 is specifically CHD Awareness week.”

February is Heart Disease Awareness month. Congenital Heart Disease is the most common disease amongst children, yet it is also one of the most underfunded and least acknowledged, she said.
“Sylvia was a pioneer in the CHD community in her short life and I believe that makes her a hometown hero, even if this was only her hometown for a few short months,” Christina said.
Problems started during her pregnancy with Sylvia. At 18 weeks, her doctor had trouble seeing the baby’s heart.
“My motherly instinct was something was wrong,” Christina said. “I pressed a little bit. Maybe they saw a hole. That would be horrible enough. But everything was getting worse and worse. They had never before seen such a series of severe defects. It was an anomaly for sure.”
The diagnosis of Congenital Heart Disease was difficult for the young family.
“It changed my whole pregnancy, obviously,” she said.
Surgery would be difficult, but doctors felt it was possible, and, if successful, could allow Sylvia to live a fairly normal life.
She was born on Dec. 14, 2015, and her first open heart surgery, to put in a shunt, was two weeks later.
“The surgeon was the biggest blessing to us. He fell in love with Sylvia. The first surgery was as flawless as it could be,” Christina said.
After the surgery, they had six months at home with Sylvia.
“Life was not normal, but it became our normal,” she said.
A nurse came by every week and they had many hospital appointments, but if you looked at her, you would have no idea she was so sick, her mother said.
“She was beautiful. She was happy. Only if you saw her scar would you know she was sick,” she said.
Then in June 2016, they were looking at homes and fell in love with one in Clarkston.
“Clarkston felt like home automatically. Our land is beautiful, walking in the field, sunlight shines on the lilies,” she said. “I’m in love with it. I love the small town feel, with access to everything you need. It feels like it’s back in time a little bit. I grew up like that and I wanted that for my kids.”
The purchase was difficult, she said.
“The previous owners, John and Cindy Williamson, liked us, and felt we were the right family. They chose our offer,” she said.
The Williamsons got to meet Sylvia, among the few who did so because the baby was homebound.
“We were not allowed to take her out in public – a cold could be fatal,” Christina said.
But the home routine was not to last.
“I noticed she not acting her normal self. She was getting bluer and fussing a lot. I knew her shunt was starting to fail,” Christina said.
They were told it would probably happen at about a year old, but it was seven months. The surgeon decided it was time for a Senning-Rastelli procedure, a double switch surgical correction of the heart’s ventricles and valves to treat a combination of defects never seen before.
She had surgery on Aug. 1, 2016. The parents received updates every hour during the 8-9 hour surgery, which were encouraging.
“The surgery was difficult but they felt it was going well,” Christina said.
Then a nurse came back and asked them to accompany her to “the room.”
“I knew she was going to tell us something horrible. Good updates are in the open. ‘The room’ is only if something bad happened,” Christina said. “It was no more than 20 feet. My feet felt so heavy. It was the longest walk of my life.”
The baby’s left ventricle was not pumping and she had to go on life support. Doctors hoped with some rest, maybe Sylvia’s heart would recover, but that was not to be.
“She went off life support and would do well for a few hours, but then start to fade again,” Christina said. “She coded a couple times in front of us. It was very difficult to see.”
She was placed on the list for a heart transplant, but she suffered a stroke and an infection, and she passed away.
“Her body so tired by this point,” Christina said. “She was fighting so very hard. She was so strong. She gave us hope several times, but it would always end with fever or sickness.”
When a child is in the hospital on life support for months, a lot happens you don’t notice, like its effect on appearance, she said.
“She looked like a doll, big blue eyes, a huge smile. When you look at pictures, you think about what it has done to your child,” she said. “Despite it all, I could feel it was her. She was still fighting. She was still there.”
She was under an incredible amount of sedatives, but she was still there under all of it, she said.
“If you put her finger in your hand, she would squeeze with every ounce of strength she had. It was incredible. That was Sylvia,” she said.
Her doctor fought to convince his colleagues to allow him to try a donor stem cell treatment to regenerate cardiac tissue. The procedure was in use for adults, but not yet for children. His efforts were successful, but Sylvia passed away before it could take effect.
“My goal now is to make that easier to get, to make this therapy more accessible for pediatric treatment,” Christina said. “She was the first, so there has to be a second, third, fourth. If it works for adults, why not for kids?”
Sylvia’s doctors, nurses, and surgeons said she taught them more about CHD and her particular defects than they could have learned in years, Christina said.
“We donated her heart to research – hopefully they will learn even more,” she said.
They are still in contact with a lot of her doctors and especially her nurses, who were with them every day.
“The nurses become your family. Her nurse was also her mom in my head,” Christina said. “The staff there (at CS Mott hospital in Ann Arbor) was just incredible. She was just incredible. She still is.”
Her goal now is to give Sylvia’s life purpose.
“I will never understand the reason why she is gone. There’s nothing natural about losing a child. Every instinct you have is just shattered. It is work now to exist. A huge piece of my heart is missing and it always will be,” Christina said. “My very strong faith gets me up in a morning. I know I will see her again, even if it’s a long time to wait.”
Bur she still has dark days when she feels stuck in muck.
“It’s a delicate balance, the passion of the CHD community and also being so angry there are people who get to wake up with kids and I don’t,” she said. “I have to learn in therapy to take care of myself. It’s hard. Grief is erratic, it’s not a cycle. There is no rhyme or reason to grief, not a pretty set of stages. It depends on the day.”
A psychologist helping her asked what was the number one thing intimidating her.
“It was waking up every day knowing your child will die before you do. What a daunting thought for a parent. What scared me was living life without her,” Christina said.
Reaching out and pressing for more CHD research for kids still in need of help is a way to do that.
“Any chance to speak publicly, I take,” she said. “Sylvia was a pioneer. The only way I can actively parent her now is to tell her story. She would have been an incredibly generous woman. She was amazing.”
Rowan was born on Sept. 13, 2017. Doctors said Sylvia’s condition was not heredity– “they called it a big, horrible fluke,” Christina said – so they shouldn’t worry about their son.
“He looks exactly like Sylvia, the same mannerisms, her smile,” Christina said. “We have a little glimpse of her in him. He’s such a happy baby. The hole doesn’t get filled, but he added a piece to my heart I didn’t know I needed.”
But when asked, she tells people she is the mother of three.
“One is just waiting for me,” she said.
Sylvia is buried in Lakeview cemetery in Clarkston, which they noticed when looking for a new home.
“What a beautiful cemetery – that’s where we’ll be eventually,” Christina said. “Placing her here didn’t give me any anxiety. God gave us the opportunity to live here, to put our roots down just before she passed away.”