Foundation created in daughter’s memoryTweet
By Bilan Williams
In April 2011, Emerson Rose Smith was born at MUSC with a heart defect called Hypoplastic Left Heart Syndrome. She passed away 76 days later.
|Jason, Susan and Emerson Rose Smith. Emerson spent her entire life, 76 days, in the pediatric cardiac intensive care unit at MUSC.|
The Emerson Rose Heart Foundation, started by her parents, Susan and Jason Smith, focuses on raising awareness about congenital heart defects. Based in Clemson, the foundation is little more than a month away from beginning its third year and has already made a tremendous difference, predominantly in the state of South Carolina.
“It’s been a wonderful, humbling experience to see how many people are also passionate about babies with congenital heart defects,” Susan said. “We wanted to do something when we were in the PCICU with Emerson Rose. God kept putting on our hearts to do something.”
One child is born with a heart defect every 15 minutes, according to the foundation’s website. Its mission is to support research toward innovative methods of diagnosis, treatment and prevention.
“Even when Emerson was in the hospital, in our hearts and in our minds, we dedicated her back to Jesus, and that gave us a lot of peace,” said Jason. “When we started this foundation, we said, ‘This is yours, God. If it does well, that’s because you want it to do well, and if it doesn’t, then that’s not in your plans.’”
The Smiths admit that at first they were a bit hesitant about choosing a hospital in South Carolina. They had heard of MUSC but had never been in the hospital before.
“We learned through a mid-pregnancy ultrasound that something was wrong with her heart, but at the time (the doctors) didn’t know what it was,” Susan said. “They told us to come back in a month, once the baby was bigger. So I began looking online for hospitals. I had never heard of congenital heart defects before.”
In their online searches, they looked at hospitals all over the country, finding renowned pediatric heart specialists in Boston, Philadelphia and, to their surprise, MUSC.
“A pediatric cardiology doctor in the upstate, Dr. David Malpass, gave us the diagnosis of Hypoplastic Left Heart Syndrome and said she would need surgery within a week of life,” Susan said. “He suggested we go to MUSC, and our initial reaction was ‘Wait a minute.’”
Reluctant to rely on a hospital in a small state like South Carolina, they told Malpass they were willing to travel just about anywhere.
“We told him, ‘You tell us where is the best place to go in the world,’” Susan said. “He said, ‘Actually, it’s MUSC in Charleston.’”
Still slightly hesitant, Jason asked Malpass a simple question. “I asked him, ‘If this was your wife and this was your baby, where would you go?’”
“And he said, ‘We’d go to MUSC.’ At that point, we realized the doctor knows where the best place to go is, and if he would go there than we should go there.”
Susan said they decided to drive down to Charleston toward the end of her pregnancy and meet some of the doctors. “We left with such a peace. We knew this was the place we needed to go. South Carolina is very fortunate to have a hospital like MUSC.”
After Emerson Rose’s birth on April 11, 2011, and her surgery, she stayed in the PCICU for a few weeks. During that time, the Smiths were in the hospital with her every day and were impressed and comforted by the staff that worked in the unit.
“Everyone made us feel like part of the team,” Susan said. “Emerson’s surgeon, Dr. Minoo Kavarana, would come and sit to chit chat with us, and the nurses would love on Emerson. They wouldn’t just take care of her medically, but put bows in her hair and dress her up.”
She said the nurses’ empathy astounded them. “They didn’t have to do that. Over and over again, we saw people do things that they didn’t have to do. They wanted to do it. And that is going above and beyond.”
After moving from the PCICU to 8D, nurses from the PCICU would still take time out of their day to visit with Emerson. Even on the day of her passing, nurses went out of their way to be with the Smiths and offer them solace.
“The day Emerson died was a shock to us all, and no one anticipated it,” her father said. “One of the nurses had the day off, and she came in at 7:30 that morning to be with us and didn’t leave until noon. There were other nurses who had worked the night shift who came up and spent hours with us as well.”
The Smiths are eternally grateful to MUSC, especially the PCICU. Jason said the way they were treated while in the unit is indescribable.
“You wonder when you go into a situation like this if you’re just seen as a customer or a patient-client. But we were treated like family. The doctors would ask us ‘What do you think? You’re observing her more than anyone else, what do you think about her treatment and how she’s doing?’ And they listened. I can’t tell you what that’s worth to us now, looking back.”
Inspired to serve
The Smiths said their time spent at MUSC was one of the reasons they felt encouraged to start a foundation in Emerson’s name.
“We wanted to help families who are here long-term,” Susan said. “We saw so many families down here, and they needed that support. We learned through Dr. Kavarana and other doctors that there’s not a ton of research money available. Those were the two things we wanted to help with, help families and help research.”
In the first year of its existence, the Emerson Rose Heart Foundation donated nearly $9,000 for 17 pulse oximeter machines at five different hospitals in South Carolina.
Eric Graham, M.D., an associate professor in pediatric cardiology, said the Smith family and the foundation’s efforts have been immensely beneficial.
“They have bought pulse oximeter machines for hospitals around the state to aid in the early detection of critical congenital heart defects,” Graham said.
The number of oximeters donated has since risen and expanded to hospitals in three other states. Between hospital meal tickets and gas cards, the foundation has given more than $6,000 to individual families with children in the hospital.
|From left standing: Jason and Susan Smith, with Rowan Smith; Josh and Ashley Bradley (parents of Kirby). Seated: PCICU nurse Liz Lucey and Campbell Jane Smith. The Bradley family sponsored one of the four recliner chairs purchased by the foundation for the PCICU in honor of Kirby.|
The Smiths said the support of the foundation has been huge.
“It kind of started at first with our family and immediate community members giving, and now we receive money from people throughout the country that we don’t even know because the word has spread,” Susan said. “The awareness is growing.”
The foundation receives funds from golf tournaments, fundraisers and even Dabo’s All In Foundation, an organization started by Clemson head football coach Dabo Swinney and his wife, Kathleen.
The PCICU at MUSC was given $10,000 to fund the purchase of a centrifuge, which can be vital to babies who develop a complication called chylothorax following heart surgery.
“The way to treat chylothorax is to restrict fat from the baby’s diet, which usually means they are switched from breast milk to a special low-fat formula,” Graham said. “With the centrifuge, we can remove fat from breast milk and allow babies to continue to receive the benefits of their mother’s milk.”
Sinai Zyblewski, M.D., assistant professor and director of fetal cardiology, said centrifuges are scarce. “Only a few hospitals in the country are able to provide this service.”
Recently, the foundation purchased four reclining chairs and donated them to the PCICU. “The families love these because it has allowed them to be at their child’s side more during their recovery,” Graham said.
These were added in addition to bedside radios the foundation had previously purchased to play soothing lullabies for babies in the unit. “These types of gifts have contributed to the PCICU’s family-centered care environment,” Zyblewski said.
Currently, there are several research and quality improvement projects dedicated to children with structural heart disease. “Dr. Zyblewski is working on improving the care we provide to children with complex heart disease including better neurodevelopment support,” said Graham.
Earlier this year, Zyblewski started a specialized cardiac neurodevelopment clinic with Jennifer Poon, M.D., an assistant professor in pediatric child development. The clinic is important to babies who spend a long time in the PCICU since they are at increased risk for neurodevelopment delays and deficits.
“Nutrition, growth, oral and motor development are the primary focus during the first year of life,” Zyblewski said. “The Emerson Rose Foundation will support the needs of the clinic including equipment and materials for neurodevelopment testing and therapies.”
The Smiths said doctors like Graham and Zyblewski who are willing to work with the foundation help fuel their desire to serve.
“They have been supportive of us from the beginning,” Susan said. “We have gotten to know almost all of the doctors in the Pediatric Cardiology Department. Mainly, they’ve been a great sounding board. They believe in what we’re doing and are so appreciative of anything the foundation can do for the PCICU.”
Legislation known as the Emerson Rose Act was introduced and passed this year in South Carolina’s general assembly and signed into law in June by Gov. Nikki Haley. Now every child born in South Carolina will have a noninvasive heart screening administered to detect congenital heart defects.
Jason said a large contributing factor to the foundation’s success has to do with how they were treated during their time at MUSC and in the PCICU.
“It was just modeled for us. We were shown how to serve through the way we were served. After you see that and you see a need, what it came down to is ‘How can we not serve?’”
The Smiths briefly moved to Charleston in order to give back to MUSC. “We feel like family,” Susan said. “Emerson was our first daughter, and she spent her entire life at MUSC. There’s just this connection. This was her home, and we wanted to give back.”
Jason said they cannot come to Charleston without visiting the hospital. “We’ll come to the hospital just to eat.”
“I just love this place,” Susan said.
Those interested in donating or volunteering for the foundation may visit http://www.emersonroseheartfoundation.org.July 31, 2013