http://theclemsoninsider.com/2016/04/08/...aving-law/

Quote:Jason and Susan Smith knew life was going to be challenging once their first child, Emerson Rose Smith, was born.

Twenty weeks through Susan’s pregnancy, doctors discovered, through an ultra sound, that Emerson had a severe heart defect called Hypoplastic Left Heart Syndrome (HLHS), a severe congenital heart defect in which the left ventricle of her heart, the one that pumps blood to the body, was underdeveloped.

Emerson was going to have open-heart surgery within the first week of her life and two more by the time she was supposed to be three years old.

On April 11, 2011, Emerson came into this world and despite appearing to be a healthy baby girl, she underwent open-heart surgery on day four of her life.

“It is one of the most complex surgeries that can be done on a child. She did great,” Susan said. “She came through beautifully. She was healing and doing great.”

Emerson spent the next two and a half months recovering at the pediatric heart center at the Medical University of South Carolina (MUSC) in Charleston, the only one of its kind in the state. Everything was going according to plan.

“We were seeing a light at the end of the tunnel, honestly, to where she was going to get discharged and was going to come home,” Susan said.

As the Smiths, who are devout Christians, soon discovered, that was not God’s plan for Emerson. On June 26, 2011, Day 76 of her young life, God called Emerson home.

“She sat up and aspirated in her lungs and 30 minutes later she was gone. She passed away,” Susan said. “It was devastating. There are really no words to describe that.”

Quote:During their two and a half month journey with Emerson at MUSC, the Smiths saw so many families like theirs, people who had to quit their jobs to be in Charleston with their babies or make that tough decision to have to go back to work and leave their babies there so they could provide.

“We saw so many families in tough situations,” Susan said.

Some families slept in the waiting rooms because they could not afford a hotel room and the Ronald McDonald House, which provides housing for families like the Smiths, was always full.

“There was a 17-year old single-mom, she was by herself, so we took her under our wing while we were there,” Jason said. “We just saw needs. The Lord just really opened our eyes to all these families and children. We really we had no idea this was going on.”

Even before Emerson passed away, the Smiths knew they had to do something. Even though their own little girl was fighting for her life at the time, they were thinking of others. During their time in Charleston, they put together and handed out little gift bags for those families sitting in the waiting room. The gift bags were filled with snacks, puzzles, reading material, anything that could help in their time of need.

Without the Smiths really knowing it at the time, it was the birth of the Emerson Rose Heart Foundation.

Quote:The mission of the Emerson Rose Heart Foundation is to change the future for those affected by congenital heart defects by providing support to families in need, advancing patient care and medical research and increasing awareness about the most common birth defect in the world.

“Our ultimate purpose through these efforts is to share the love and hope of Jesus Christ,” the Smiths write at the end of their mission statement.

Quote:With some idea from Emerson’s doctor, Minoo Kavarana, as well as other cardiologist at MUSC, the Smiths discovered there were plenty of resources available for the parents, but there was not anything available for the children.

“We thought, we could try to do something about that, but we had no idea what that could be,” Jason said.

The Smiths remember how Dr. Kavarana motivated them.

“We certainly are not researchers, but we can try to raise some money. We can absolutely do that part,” Susan said. “After Emerson passed away, we couldn’t just forget about it all. We could not forget about all the families that were still down there.

Quote:At first, the Smiths did not know where to go. With God’s guidance, they heard about the Swinneys’ All-In Team Foundation. The All-In Team Foundation’s objective is to provide organizations like the Emerson Rose Heart Foundation an opportunity to receive funding to execute projects that fit within the Swinneys’ mission statement.

“They are just such a blessing,” Susan said. “The Swinneys are just an inspiration to us in how they work so hard and just give to the community. We are just so blessed that we learned about their foundation.”

When Emerson passed away, there were only a couple of states that required newborns to be tested for any heart defects. South Carolina was not one of those states. In fact, no hospital in South Carolina had the equipment necessary to do the screening.

As residents of Clemson, and growing up in the nearby towns of Walhalla and Salem, the Smiths were surprised to learn that their local hospital, Oconee Medical Center, was not equipped with the necessary equipment for such a test because it could not purchase the equipment unless it was federally mandated.

“That’s when we went to the All-in Foundation Web site and filled out a grant,” Susan said. “This was the first grant we had submitted. We had started (the Emerson Rose Heart Foundation) two months earlier. We were a brand new non-profit. There is no way we are going to get this money. At least that is what we thought.”

However, the Smiths heartbreaking story, and their mission, struck a chord with Dabo and Kathleen Swinney.

Quote:The Smiths were in Charleston when Mike Brown, who helps the Swinneys with the All-In Team Foundation, called Susan and Jason to give them some good news.

Before Brown’s phone call, Susan was having a bad day. She was sad and was missing her little girl.

“Then I got this call and that absolutely sent me to the moon. I was thrilled,” she said.

Brown informed the Smiths the All-in Team Foundation was going to provide the necessary funding so Oconee Medical could purchase the equipment to test newborns for potential heart defects.

After that, things progressed quickly.

“We are able to take what the Swinneys did at Oconee and we were able to purchase equipment at other hospitals (in the state) and then we were able to work with legislators in Columbia,” Susan said. “It all started with the Swinneys funding this little project at the Oconee Medical Center.”

Quote:After their daughter’s death, the Smiths pushed the general assembly to pass a law that requires hospitals to screen newborns for heart defects before they can go home with their parents. On June 13, 2013, nearly two years after Emerson Rose left this World, The Emerson Rose Act became law.

“We hear from hospitals that babies’ lives have been saved because of this test,” Susan said. “To think that it was not just us, but Dabo and Kathleen reading our grant … If we had not received that grant money we would not have been able to fund the equipment at Oconee Medical. We would not have started buying the equipment.

“I truly believe it was the Lord, honestly. The Lord put us together with Dabo and Kathleen and just by their generous hearts and our vision, and knowing about this test, we now know there have been babies’ lives that have been saved because of this. It’s just amazing.”

According to a story written in The Charleston Post & Courier on Nov. 22, 2015, from 1995-2013 more than 70 babies a year, ranging from 71 to 98, died from some sort of a heart defect in the state of South Carolina. However, in 2014, that number dropped to 56 – a 23-percent decrease from the year before.

The infant mortality rate in the state of South Carolina dropped to its lowest level ever in one year. Though experts such as Michael Smith, the state health department’s director of research and planning, says you can’t read too much into one year of statistical data, he is optimistic the Emerson Rose Act is doing what it is supposed to do.

Quote:The Smiths hear from hospitals almost every day, especially from MUSC, how a family came to them after their newborn was tested for a heart defect and they were able to save their baby’s life. These lives have been and will continue to be because of the Emerson Rose Act.

“God redeems a lot. He saved us. Once He saves you, He redeems you,” Jason said. “I know that is why Kathleen and Dabo do what they do because the Lord redeems us so that we can be people that redeem, so that we can help people that are suffering and that are hurting. It is about bringing Jesus the glory.”

The Smiths have not just been blessed knowing Emerson’s death has saved countless others and helped families around the World, but her death saved them too. God has since blessed them with two beautiful little girls – Rowan and Campbell.

Pictures of Emerson and the short time she was on earth are scattered all throughout the house. Her two little sisters know all about their big sister and that she has gone home with the Lord.

“They know they had a sister named Emerson Rose who had a sick heart,” Susan said. “It’s just really neat to tell them stories about her and they see her pictures and they love to look at pictures of her.”

They know that she died so others could live.

(04-08-2016 11:34 AM)Kaplony Wrote:  http://theclemsoninsider.com/2016/04/08/...aving-law/

Quote:Jason and Susan Smith knew life was going to be challenging once their first child, Emerson Rose Smith, was born.

Twenty weeks through Susan’s pregnancy, doctors discovered, through an ultra sound, that Emerson had a severe heart defect called Hypoplastic Left Heart Syndrome (HLHS), a severe congenital heart defect in which the left ventricle of her heart, the one that pumps blood to the body, was underdeveloped.

Emerson was going to have open-heart surgery within the first week of her life and two more by the time she was supposed to be three years old.

On April 11, 2011, Emerson came into this world and despite appearing to be a healthy baby girl, she underwent open-heart surgery on day four of her life.

“It is one of the most complex surgeries that can be done on a child. She did great,” Susan said. “She came through beautifully. She was healing and doing great.”

Emerson spent the next two and a half months recovering at the pediatric heart center at the Medical University of South Carolina (MUSC) in Charleston, the only one of its kind in the state. Everything was going according to plan.

“We were seeing a light at the end of the tunnel, honestly, to where she was going to get discharged and was going to come home,” Susan said.

As the Smiths, who are devout Christians, soon discovered, that was not God’s plan for Emerson. On June 26, 2011, Day 76 of her young life, God called Emerson home.

“She sat up and aspirated in her lungs and 30 minutes later she was gone. She passed away,” Susan said. “It was devastating. There are really no words to describe that.”

Quote:During their two and a half month journey with Emerson at MUSC, the Smiths saw so many families like theirs, people who had to quit their jobs to be in Charleston with their babies or make that tough decision to have to go back to work and leave their babies there so they could provide.

“We saw so many families in tough situations,” Susan said.

Some families slept in the waiting rooms because they could not afford a hotel room and the Ronald McDonald House, which provides housing for families like the Smiths, was always full.

“There was a 17-year old single-mom, she was by herself, so we took her under our wing while we were there,” Jason said. “We just saw needs. The Lord just really opened our eyes to all these families and children. We really we had no idea this was going on.”

Even before Emerson passed away, the Smiths knew they had to do something. Even though their own little girl was fighting for her life at the time, they were thinking of others. During their time in Charleston, they put together and handed out little gift bags for those families sitting in the waiting room. The gift bags were filled with snacks, puzzles, reading material, anything that could help in their time of need.

Without the Smiths really knowing it at the time, it was the birth of the Emerson Rose Heart Foundation.

Quote:The mission of the Emerson Rose Heart Foundation is to change the future for those affected by congenital heart defects by providing support to families in need, advancing patient care and medical research and increasing awareness about the most common birth defect in the world.

“Our ultimate purpose through these efforts is to share the love and hope of Jesus Christ,” the Smiths write at the end of their mission statement.

Quote:With some idea from Emerson’s doctor, Minoo Kavarana, as well as other cardiologist at MUSC, the Smiths discovered there were plenty of resources available for the parents, but there was not anything available for the children.

“We thought, we could try to do something about that, but we had no idea what that could be,” Jason said.

The Smiths remember how Dr. Kavarana motivated them.

“We certainly are not researchers, but we can try to raise some money. We can absolutely do that part,” Susan said. “After Emerson passed away, we couldn’t just forget about it all. We could not forget about all the families that were still down there.

Quote:At first, the Smiths did not know where to go. With God’s guidance, they heard about the Swinneys’ All-In Team Foundation. The All-In Team Foundation’s objective is to provide organizations like the Emerson Rose Heart Foundation an opportunity to receive funding to execute projects that fit within the Swinneys’ mission statement.

“They are just such a blessing,” Susan said. “The Swinneys are just an inspiration to us in how they work so hard and just give to the community. We are just so blessed that we learned about their foundation.”

When Emerson passed away, there were only a couple of states that required newborns to be tested for any heart defects. South Carolina was not one of those states. In fact, no hospital in South Carolina had the equipment necessary to do the screening.

As residents of Clemson, and growing up in the nearby towns of Walhalla and Salem, the Smiths were surprised to learn that their local hospital, Oconee Medical Center, was not equipped with the necessary equipment for such a test because it could not purchase the equipment unless it was federally mandated.

“That’s when we went to the All-in Foundation Web site and filled out a grant,” Susan said. “This was the first grant we had submitted. We had started (the Emerson Rose Heart Foundation) two months earlier. We were a brand new non-profit. There is no way we are going to get this money. At least that is what we thought.”

However, the Smiths heartbreaking story, and their mission, struck a chord with Dabo and Kathleen Swinney.

Quote:The Smiths were in Charleston when Mike Brown, who helps the Swinneys with the All-In Team Foundation, called Susan and Jason to give them some good news.

Before Brown’s phone call, Susan was having a bad day. She was sad and was missing her little girl.

“Then I got this call and that absolutely sent me to the moon. I was thrilled,” she said.

Brown informed the Smiths the All-in Team Foundation was going to provide the necessary funding so Oconee Medical could purchase the equipment to test newborns for potential heart defects.

After that, things progressed quickly.

“We are able to take what the Swinneys did at Oconee and we were able to purchase equipment at other hospitals (in the state) and then we were able to work with legislators in Columbia,” Susan said. “It all started with the Swinneys funding this little project at the Oconee Medical Center.”

Quote:After their daughter’s death, the Smiths pushed the general assembly to pass a law that requires hospitals to screen newborns for heart defects before they can go home with their parents. On June 13, 2013, nearly two years after Emerson Rose left this World, The Emerson Rose Act became law.

“We hear from hospitals that babies’ lives have been saved because of this test,” Susan said. “To think that it was not just us, but Dabo and Kathleen reading our grant … If we had not received that grant money we would not have been able to fund the equipment at Oconee Medical. We would not have started buying the equipment.

“I truly believe it was the Lord, honestly. The Lord put us together with Dabo and Kathleen and just by their generous hearts and our vision, and knowing about this test, we now know there have been babies’ lives that have been saved because of this. It’s just amazing.”

According to a story written in The Charleston Post & Courier on Nov. 22, 2015, from 1995-2013 more than 70 babies a year, ranging from 71 to 98, died from some sort of a heart defect in the state of South Carolina. However, in 2014, that number dropped to 56 – a 23-percent decrease from the year before.

The infant mortality rate in the state of South Carolina dropped to its lowest level ever in one year. Though experts such as Michael Smith, the state health department’s director of research and planning, says you can’t read too much into one year of statistical data, he is optimistic the Emerson Rose Act is doing what it is supposed to do.

Quote:The Smiths hear from hospitals almost every day, especially from MUSC, how a family came to them after their newborn was tested for a heart defect and they were able to save their baby’s life. These lives have been and will continue to be because of the Emerson Rose Act.

“God redeems a lot. He saved us. Once He saves you, He redeems you,” Jason said. “I know that is why Kathleen and Dabo do what they do because the Lord redeems us so that we can be people that redeem, so that we can help people that are suffering and that are hurting. It is about bringing Jesus the glory.”

The Smiths have not just been blessed knowing Emerson’s death has saved countless others and helped families around the World, but her death saved them too. God has since blessed them with two beautiful little girls – Rowan and Campbell.

Pictures of Emerson and the short time she was on earth are scattered all throughout the house. Her two little sisters know all about their big sister and that she has gone home with the Lord.

“They know they had a sister named Emerson Rose who had a sick heart,” Susan said. “It’s just really neat to tell them stories about her and they see her pictures and they love to look at pictures of her.”

They know that she died so others could live.

Ugh, I cannot possibly imagine what they went through. Our little girl has dwarfism, so we're on all the parents of little people groups on facebook. This one family got diagnosed with dwarfism in utero, but it turned out that he had a more rare and fatal form of dwarfism. He survived for about 8 hours. That night as I was putting my little girl to bed, I just sat there and held her for over an hour after she fell asleep, thanking God for every second He gives us with her.