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August Recess in Mississippi

This year we had three Mississippi volunteer advocates make August recess visits with either their U.S. Congressman, Representative or Senator.  These scheduled meetings were held to discuss the four most important federal advocacy priorities of the American Heart Association including: Child Nutrition Reauthorization, Cardiac Rehabilitation, the F.A.S.T. Act and National Institutes of Health Funding.

Claire Hick of Hernando spoke with Representative Trent Kelly and Field Director, Walt Starr, about Cardiac Rehab and the F.A.S.T. Act.  "I was able to speak firsthand about how this type of legislation has helped and will hopefully continue to support my hospital system do a better job of taking care of patients and making adults and children in the community healthier. It was a productive meeting, and I'm thankful to be given the opportunity to advocate on these important issues for my community and state."

Ollie Galloway of Jackson met with the office of Senator Thad Cochran about the Child Nutrition Reauthorization.  She had the opportunity to meet and share the 'why' behind this Senate Child Nutrition bill that will help children achieve better long-term health and academic success. 

 Sherri Bevis of Diamondhead met with the office of Congressman Steve Palazzo to discuss Child Nutrition Reauthorization. 

Thank you to these wonderful volunteers advocates who made time to advocate for these key issues in Mississippi. We will continue to reach out to our elected representatives to make sure they continue to prioritize and support healthy initiatives, locally, across the state, and nation. 

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Meet Our Mississippi Advocacy Committee

The American Heart Association is working toward improving the cardiovascular health of all Americans by 20 percent, and reducing deaths from cardiovascular diseases and stroke by 20 percent, all by the year 2020. Policy change is essential for us to meet this bold goal – and our volunteers are at the heart of our efforts.

Each year, the American Heart Association invites a diverse group of volunteers to serve on the Mississippi Advocacy Committee, which is the advisory board to volunteers and staff on state public advocacy issues. With the leadership of our subcommittee, we create a state public policy agenda that impacts heart disease and stroke risk factors and protects heart disease and stroke patients. We also conduct grassroots and lobbying activities to educate the public and policymakers about the need for policy change.

This year, we are proud to announce our 2016-17 Mississippi Advocacy Subcommittee:

• Claire Hick, Chair: Baptist Memorial Hospital- Desoto, Hernando

• Ollie Galloway, Vice-Chair: Sysco Food Services, Jackson

• Mary Taylor: University of Mississippi Medical Center, Jackson

• Jan Collins: Madison County Business League & Foundation, Madison

• Sherri Bevis: Office of the Secretary of State, Gulfport

• Richard Summers: University of Mississippi Medical Center, Jackson

• Lolita Bolden: Unite One Voice, Jackson

• Rhonda Lampkin: The Partnership for a Healthy Mississippi, Flowood

• Margie Jepsen: eSoftware Solutions, Madison

Stay tuned as we release our 2016-17 public policy agenda for Mississippi and let you know how you can help advocate in your community!

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Our Team is Growing

Over the past month, our Greater Southeast Affiliate Advocacy team has announced the addition of two Regional Vice Presidents and a Grassroots Specialist to assist with our lobbying and grassroots efforts across Alabama, Florida, Georgia, Louisiana, Mississippi, and Tennessee.

Nathan Mick

On July 18, 2016, Nathan Mick joined the American Heart Association as Regional Vice President of Advocacy for the Greater Southeast Affiliate. He is responsible for managing our Government Relations Directors in Alabama, Georgia, Louisiana, Mississippi, and Tennessee.

Nathan has a tremendous amount of experience in and around the policy and political arenas. He has been the Vice-President of Government Affairs and Business Development at StateBook International the past few years, where he was responsible for stakeholder relationships, government relations, brand, memberships, and strategic partnerships. He also served as the chief liaison to embassies, international companies, local, state and federal government officials. In late 2015, Nathan served as an advisor to the Kentucky Governor’s transition team on Economic Development and provided advice and recommendation directly to the governor and key staff to establish their team and system following the election. Nathan also served as the Carlisle and Nicholas County Industrial Development Authority, Government Relations and Economic Development Advisor and prior to that was the Garrard County Economic Development Director for several years. Nathan was the Deputy Campaign Manager and Political Director for the Pete Rickets for United States Senate Campaign in Nebraska, who is currently the Governor of Nebraska, and he was Deputy Chief of Staff to Senator Chuck Hagel.

Nathan graduated from Centre College in Kentucky, has a Master’s degree from the Naval War College, and has Economic Development and Community Development Certifications from the University of Oklahoma and the University of Kentucky.  Nathan worked for a regional arts center during college, where he managed the staff and was the marketing manager for the Atlanta Olympic Games for the Celebration of the Century.

He is active in the American Council of Young Political Leaders and has been on numerous trips with them and was also selected to represent the United States as an official delegation representative at Organization for Security and Co-operation in Europe Human Dimension Implementation Meetings in 2007, 2008 and 2013.

Todd Rosenbaum

On July 18, 2016, Todd joined the American Heart Association as the Regional Vice President of Government Relations for the Greater Southeast Affiliate. He manages our community government relations, grant management and grassroots functions.

Todd served as the Executive Director of the Florida State Alliance of YMCAs for the past five years, where he was responsible for coordinating advocacy activities, board development, working with committees, staff supervision, fiscal management, grant oversight, securing resources and event management. During his tenure he secured and managed over $370,000 in private grants and over $2 million in state government funding for both the YReads and Youth in Government Program.

Prior to his role as Executive Director of the Florida State Alliance of YMCA’s, Todd was the Northwest Florida Executive Director and ultimately the State Executive Director of Mothers Against Drunk Driving (MADD) in Florida. His role at MADD required him to serve as the administrative (state agency) and legislative lead, leverage the grassroots network and increase the number of MADD signature events. In addition he managed a team of six throughout the state and a $2.8 million budget. 

Before joining MADD, Todd spent the 12 years at the YMCA of Florida’s First Coast, where he began as a Program Manager and was promoted several times until he became the Executive Director. He was responsible for opening a new $4.5 million, $40,000 square foot branch, managing a downtown YMCA with a $2.79 million budget and increasing revenue at that location. He also led a management team of six, more than 100 other staff and was responsible for a multi-million dollar budget for several years in a row.   

Laura Bracci, MPH

On August 1, 2016, Laura Bracci joined the Greater Southeast Affiliate advocacy team as a Grassroots Specialist. In this role, Laura provides grassroots support for local campaigns led by Advocacy and Community Health, as well as assists with managing the You’re the Cure network at the affiliate level.

Laura is a huge public health advocate and is very familiar with the American Heart Association. In fact, she worked for our organization for nine years, first as a Health Initiatives Manager and then the Georgia State Health Alliance Director until the department sunset in 2010.

After working for the American Heart Association, Laura remained actively engaged in public health. She worked as a consultant for a Farm to Preschool Summit in Georgia in 2013 – the first in the nation! She also worked with the Strong4Life Research and Development team to initiate the planning of research projects relevant to childhood obesity prevention and treatment.

For the past five years, Laura has worked as a project manager for Georgia State University’s School of Public Health. She has managed and cultivated state-level Leadership Council focused on improving policies to decrease childhood obesity prevalence.

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How fate brought together three stroke survivors' families

The following article about You're the Cure advocate Ryley Williams and two other youths who survived strokes on the same day was published by AHA CEO Nancy Brown in the Huffington Post on July 6th, 2016. A link is provided at the end of the story.

In the community of Dartmouth in the Canadian province Nova Scotia, Nik Latter’s family is throwing what his mom promises will be “a big ol’ party.” Fist bumps and hugs will celebrate the fact he’s made it an entire year since his devastating July 8th.

One by one, over each of the last three July 8s, Ryley, Amber and Nik suffered a stroke. Yet the oddity of their shared date is only part of what led their moms to create a de facto support group.

What really brought them together is that Ryley, Amber and Nik were — and still are — teenagers.

Ryley was 15 and devoted to becoming the starting nose guard on his varsity football team. Amber was 13 and loved playing softball and hanging out with the two girls who’d been her best friends since kindergarten. Nik was a few days shy of 18 and had left school to work at a restaurant; he’d bought a car and aimed to become a voluntary firefighter following that upcoming birthday.

Now, well, their dreams are different.

As we approach July 8, the families allowed me to share their stories to send an important message: Stroke can attack anyone at any time.

***

Ryley Williams went into the summer following his freshman year at Bentonville (Arkansas) High with one goal. He wanted to draw the attention of the varsity football coaches.

So he ran and lifted weights. He ate six meals a day, devouring only foods that would expand his 6-foot, 242-pound frame the right way.

“Honey, you’re never late, you make good grades, you don’t cause any problems — trust me, the coaches notice you,” his mom, Terri Rose, told him. “They just won’t tell you they notice you.”

The morning of Monday, July 8, 2013, Ryley went to an indoor field for football practice. He was stretching when he grabbed his leg and collapsed. Everyone thought he’d pulled a muscle and overreacted. Then they realized there was more to it.

At the hospital, a brain scan showed a bigger problem than the facility could handle. He was flown by helicopter to Arkansas Children’s Hospital in Little Rock. It wasn’t easy fitting someone his size into the chopper.

When they landed, seizures began. Off he went for an MRI. Looking at the results, the doctor pointed to five spots.

“This is a stroke, this is a stroke, this is a stroke, this is a stroke and this is a stroke,” the doctor said. “We need to find out why he has so many blood clots in his brain.”

Around 3 a.m. Wednesday, they still didn’t know why. And now they had a new problem. Ryley’s brain was swelling.

He underwent an operation to remove part of his skull. With Ryley sedated, doctors also took a closer look at his heart. They found hair-like strands of a bacterial infection on the outside of two valves. A-ha! This was the source.

Next question: How much brain damage had he suffered? His right side didn’t function. Doctors cautioned he may never walk or talk.

As Ryley was coming out of his medically induced coma, some football players visited. Coaches, too. They brought a varsity jersey with his number, 99.

“The head coach drove down to Little Rock and stayed with us when Ryley had the skull surgery,” Terri said. “Other coaches came to visit, too. They told us they were watching him. They knew he was going to have a big year. Hearing that was bittersweet.”

Fast forward to today.

His right arm remains compromised. He also battles aphasia, a condition that sometimes makes it hard for him to get words out. Still, Ryley recently graduated high school, right on time. He even spent the last year working at a Walmart Neighborhood Market. And he’s become an advocate for the American Stroke Association. Last year, he and Terri encouraged a Congressional subcommittee in Washington, D.C., to support more funding for research and awareness about pediatric stroke.

He’s spending this summer at a facility that specializes in neuropsychology recovery for victims of strokes and traumatic brain injuries. He’s learning skills to live on his own, although he plans to spend two years at home while attending Northwest Arkansas Community College.

“He’s incredibly positive,” Terri said. “He’s accepted everything. He tells you, `This is who I am now.’”

***

The night of July 8, 2014, Amber Hebert was on first base when the next batter hit the ball to the outfield.

Amber ran to second base without anyone trying to get her out, then fell as if she’d been punched. She vomited and went into a seizure. Her 5-foot-3, 86-pound body thrashed so violently that four firefighters held her down while a fifth injected her with medicine.

The local hospital in Bellevue, Nebraska, ended up sending her to Children’s Hospital & Medical Center in Omaha. The seizures continued until 3 a.m.

“When she finally stopped seizing, she was able to see and talk and understand you,” said her mom, Tirzah Hebert. “But I could see the fear in her eyes.”

Tests — and seizures — continued throughout the next day. Finally, doctors declared she’d suffered a stroke.

The next day, Amber sat in a chair holding a cup and walked around her hospital floor. The following day, she had a bit more difficulty holding a cup but could still walk. That night, Tirzah asked if she understood what had happened.

“I don’t know,” Amber said.

The next day, a Saturday, Amber couldn’t walk, talk or hold up her head. This continued until Tuesday, when she finally underwent an MRI. It showed that her brain was swelling.

Doctors were able to reduce it with medicine. Then came the waiting game to determine the extent of brain damage. Soon, she began smiling and communicating with her left hand — fist for yes, open palm for no.

These days, Amber walks, but sometimes the toes on her right foot curl, causing her to drag her foot.

She can’t move her right hand or wrist. She also has aphasia. Therapists believe that with practice she’ll improve in every area. (Doctors never determined the cause of her stroke.)

Alas, there have been other obstacles.

Shortly after Amber made it home, her dad’s dad — with whom she was very close — died of cancer. Four months later, a lump in her dad’s neck was found to be cancerous. Early detection plus chemotherapy and radiation helped him beat it.

School proved no refuge. She went from being one of the most popular girls at school to getting bullied. Her two lifelong best friends “just disappeared,” Tirzah said. Amber switched to homeschooling until giving the classroom another try this summer.

“She’s a happy girl, for the most part, very loving and caring,” Tirzah said. “She still has some depression, but who wouldn’t? To have your life completely turned upside down like hers has?”

***

Even as a child, Nik Latter struggled with migraines. So, last June, when he had one that was bad enough to go to a hospital, nobody thought much of it.

Nor did anyone think twice when he left work complaining of a migraine on Sunday, July 5, 2015.

The next day, he endured what he described as the worst migraine he’d ever experienced. He wore sunglasses indoors and had his mom, Rhonda, drive him to a clinic. The next day, he slept at his grandparents’ house because it was quieter than being home with his two younger sisters.

Rhonda visited him Wednesday, he stared blankly. He tried talking, but nothing came out.

“He’s having a stroke,” she declared. “Call 911!”

A scan showed a mass on the right side of his brain. During an operation, doctors determined it was a stroke. Days later, it was determined the cause was a sinus infection gone severely wrong. The infection broke the barrier between the sinus and the brain, releasing a blood clot.

Nik’s recovery started great. He gave hugs, pulled his mom’s hair and played thumb wars with his sisters. Then, in the early hours of July 16, he had another stroke. On the other side of his brain.

Doctors said Nik may not survive. But the family wanted to give him every chance. Their faith was rewarded when he was weaned off the breathing tube.

He continued clearing hurdles, although he remained hospitalized until March. The long struggle seemed to deflate him; being home reinvigorated him. He now puts his right foot down and pushes his wheelchair. He fist bumps with his right hand, laughs, smiles and kicks.

He makes sounds and, sometimes, says words. Not enough to say he’s talking. But he’s trying.

“He’s very aware of his surroundings,” Rhonda said.

***

While each stroke story is different, every stroke shares similarities.

Time lost is brain lost. The sooner the stroke can be recognized, the sooner treatment can begin. The gold standard of treatment is called tPA. If this clot-busting drug is administered within three hours, and up to 4.5 hours in some cases, the extent of recovery can improve drastically.

That’s why the American Stroke Association urges everyone to remember the acronym FAST. When you see Face drooping, Arm weakness or Speech difficulty, it’s Time to call 911.

Stroke is the No. 2 killer worldwide and No. 5 in the United States. While it’s true that strokes usually happen to older people is true, Ryley, Amber and Nik are proof that’s not always the case.

The world of pediatric stroke is small enough — and the pull of the internet is strong enough — that families of survivors are bound to find each other.

For instance, Terri connected with Lea Chaulk, a Canadian mom whose son was about the same age as Ryley and had a stroke about the same time. Terri and Lea became like sisters as they helped their sons grieve over the lives they lost and learn to embrace their new reality. Lea later introduced Terri to Rhonda.

Meanwhile, Ryley got to know four teenagers from the Kansas City area who were featured by American Heart Association News after they overcame strokes during high school to graduate on time. One of those families had gotten to know the Heberts, and they connected Terri and Tirzah.

The three moms — Terri, Tirzah and Rhonda — lean on each other often. They’ve yet to meet in person, although Ryley and Amber have shared messages via Facebook.

“Knowing that I’m not alone has helped soooo much,” Tirzah said.

“If I didn’t have some of these moms, I think I’d go insane,” said Rhonda, laughing. “Sometimes I sit down and get lost in thought and get upset. Then I’ll send one of them a message saying `I need you to bring me back down to Earth.’”

Three families irrevocably altered, all on a July 8. It’s incredible. Yet from this coincidence comes strength.

“I’ve told my family, `Look, it happened to two other kids on the same day,’” Tirzah said. “It’s like, Wow. And we’ve all made it this far. And you know what? We’re going to keep on going.”

Read the rest of the story on the Huffington Post.

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Find the Heart Walk Near You

The Heart Walk is the American Heart Association’s premier community event, helping to save lives from heart disease and stroke. More than 300 walks across America raise funds to support valuable health research, education and advocacy programs of the American Heart Association in every state. Our You’re the Cure advocacy movement – and our public policy successes along the way – are all made possible by the funds raised by the Heart Walk. Whether it’s CPR laws passed to train the next generation of lifesavers or policy to regulate tobacco products and prevent youth smoking,  together we are building a world free of cardiovascular diseases and stroke. The Heart Walk is truly a community event, celebrating survivors, living healthy, and being physically active. We hope you’ll join us and visit the site today. If there is not a walk listed in your area soon,  it may be coming in the spring season or you can join a virtual event. And don’t forget to connect with your local advocacy staff and ask about your local Heart Walk day-of You’re the Cure plans - they may need your help spreading the word. Thanks for all you do, and happy Heart Walk season.

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State Advocacy Committee Chair Ends Second Term

Guest Blogger: Carol Barnes, Ph.D.

It has been such a pleasure to chair the American Heart Association’s Mississippi Advocacy Committee for the past two years. Working in the field of health and kinesiology has opened my eyes to the issues that we face in our society today. We live in a time where we have numerous opportunities to become the healthiest nation and enjoy great quality of life, yet we find ourselves facing so many issues related to poor health.  

When I first started volunteering with the American Heart Association, I was very surprised by the number of issues that they deal with daily; issues that are important to providing our society with the opportunity to enjoy the benefits of a healthy lifestyle. In May 2015, I traveled to Washington D.C. as a You’re the Cure advocate to help improve our overall health. 

One issue that is very important to me and our future generation is healthy school meals. The Healthy, Hunger-Free Kids Act which was reauthorized in 2010 provides funding for federal school meal and child nutrition programs, increasing the access to healthy food, and promoting overall wellness. As a result, children are eating 16 percent more vegetables and 23 percent more fruits on a daily basis, and over 90 percent of schools are meeting all the standards nationwide. 

Another issue that is significant to improving the health of our citizens is smoke-free air. Katherine Bryant, American Heart Association Mississippi Government Relations Director, and staff have worked tirelessly to promote a smoke-free Mississippi. It has been determined that 68 percent of the voters in Mississippi support smoke free legislation! It is time to give the people what they want and let our legislators know about this. The healthcare cost savings is so significant from this one piece of legislation. Within a few years after Hattiesburg passed a smoke-free ordinance, they reported a savings of $2,367,909 in healthcare cost in their city alone.  

One last policy change that has occurred over the past two years is that the nation has realized the importance of increasing National Institute of Health (NIH) funding, This increase will help the NIH  continue to provide the latest research results in finding a cure and treating life-threatening illnesses such as heart disease, cancer and Alzheimer’s. In 2016, lawmakers approved a $2 million boost in funding for 2017; this is so crucial in helping our nation to find a cure and provide better quality of life for our citizens for years to come.  

I urge you to continue volunteering with American Heart Association and doing your part to make a difference in the health status of our citizens for years to come. I am very grateful that I have had this opportunity. 

 

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Help Protect PE for Kids Like Me!

Guest post from Reagan Spomer, 6th grader Alliance for a Healthier Generation Youth Advisory Board Member & You’re the Cure Advocate

I have two words for you… scooter hockey.  Sounds fun, doesn’t it?  That’s because it is!  Scooter hockey, along with cage ball and 3-way soccer are some of my favorite activities in gym class, which I have a few times a week.

I’m glad I have physical education for a number of reasons.  It keeps me active and teaches me to try new things.  It helps me focus on my school work.  It relieves my stress.  And most of all, it makes me feel great! 

But I know a lot of schools don’t have regular PE like my schools does.  That means a lot of kids are missing out on the benefits of being active during the school day.  I think this needs to change.   

Will you help?  As part of the nationwide campaign to protect PE in schools, Voices for Healthy Kids has created a photo petition map to show how many people across the country love PE like I do.  As people share their pictures, the map will change colors.  I’ve added my “I heart PE” photo for South Dakota.  Will you do the same for your state?  It’s really easy:

  1. Print an “I heart PE” sign (or make your own!)
  2. Take a picture of yourself holding the sign.
  3. Click on your state to share your photo.

Thanks for helping to protect PE for kids like me!
-Reagan

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Cardiac Arrest Athlete in Mississippi Playing On

E.J. Galloway had just come off the court during a summer league basketball game when he suddenly collapsed. The seemingly healthy 16-year-old was in cardiac arrest.

His coach, Willie Swinney, knew exactly what to do. He started CPR. A parent from the opposing team, John Knight, joined him. They continued until paramedics arrived 15 minutes later.

“God had all the right people in the right place at the right time,” said E.J.’s mother, Ollie Galloway. “We know that CPR and God saved his life.”

Read the rest of E.J.'s incredible story on heart.org and where he plans on continuing his education and playing basketball in college.

E.J.'s mother, Ollie, is a current member of the American Heart Association's Mississippi Advocacy Committee.

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Will you help influence scientific research?

We need to hear from consumers like you as the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI) partner together on the future of research. Your experience could lead to the next research study to improve heart disease and stroke treatment.

As an advocate we’ve asked you to speak out for increased funding for medical research and you’ve answered by contacting lawmakers and sharing your personal stories as survivors, caregivers, and loved ones touched by heart and stroke disease. Now we invite you to share your experience, the decisions made in determining your or your loved one’s treatment plans and the factors that influenced those decisions. If we better understand your experience it can help guide the research that will lead to better care tailored to the specific needs of patients.

If you’ve had a heart attack, suffered a stroke, or you know a loved one who has, your unique understanding could help guide research to solve un-met care challenges faced by individuals like you and improve heart and stroke treatment.

Here are the details:

  • We are focused on un-met challenges faced by patients and caregivers like you. 
  • To join this challenge, you’ll be asked to provide a written submission of your first-hand experience after a heart disease or stroke event.
  • The story and description of the concerns you faced and the decisions you made should be personal and not a general case.
  • A team of scientific professionals and patient representatives with expertise in heart disease and stroke will review your story. Learning more about issues and concerns important to your decision-making can help them improve experiences and outcomes for patients in the future.
  • If your submission is chosen, you could win $1,000 and possibly help shape the future of cardiovascular research.
  • All submissions must be received by June 8, 2016.

Please take this important challenge and share your insights. Your story matters. Take the challenge today!

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Alison & Vera Kathryn Biggers, Jackson

On February 16, 2016, we welcomed our daughter, Vera Kathryn, at 11:15 a.m. weighing 5 pounds 12 ounces. Vera Kate had a great first day of life and we were wrapped in joy with our first born. The morning of Thursday, February 18, the nursery brought Vera Kate in to eat around 2:30 a.m. but told us that she would need to return to the nursery in about 30 minutes because her oxygen saturation was a little low. In our sleepy fog, we didn’t think much of it. We fed her and sent her back. When Vera Kate came back to the room around 5:30am to eat again, we asked the nurse if they had rechecked her oxygen saturation and she said no, they were waiting on Dr. Robbins to come in for the day. Again – we didn’t think anything of it. When 8:30 a.m. came and we didn’t see Vera Kate, we got concerned and called the nurse. She said that her oxygen saturation was still low so they were going to do an echocardiogram on her just to make sure everything checked out normal. 

This was the point when we got concerned. Dr. Robbins came in and spoke to us. He explained that Dr. Braden, the pediatric cardiologist, was consulted to read her echo. study and he would come talk to us after he finished. Dr. Robbins explained that this Pulse Ox screening, that measures oxygen saturation in the blood, is a non-invasive measure that he did not want to overlook. Around 10:30 a.m., Dr. Braden came in to give us the news that our daughter had total anomalous pulmonary venous return (TAPVR). As one would expect, this came as devastating news to us – our two day old daughter has a congenital heart defect. Dr. Braden explained her condition with a drawing and reassured us that her heart could be fixed with surgery. He said he had already called Dr. Salazar at Batson’s Children’s Hospital and they were prepared for our arrival. After Dr. Braden left they finally brought Vera Kate back to our room to prepare her for her ambulance trip to Batson’s Children’s Hospital. Because I was not yet discharged from the hospital, my husband rode with her and I would have to come later. Letting someone take your two day old daughter away from you in an ambulance is probably one of the hardest things I have had to go through. Once I was discharged, I met my husband at the children’s hospital. They admitted Vera Kate to the Cardiac Intensive Care Unit (CICU) to do a full work up of her heart. They explained to us that they would get an echo of her heart as well as a full body work up to make sure there were no other issues present. Then they would present her case at the Cardiac Rounds meeting to determine their course of action. On Friday, February 19, the cardiac team met with us and explained that Vera Kate did have TAPVR which would require open heart surgery. Dr. Salazar explained that her condition was the best case scenario for a successful surgery. He then told us that conditions like this usually go undiagnosed until the child gets very sick 2-3 months down the road and that it was the oxygen saturation test that saved her. The plan was to give her the weekend and he would operate on her Monday morning at 7:00 a.m. We spent the weekend snuggling, feeding and spending every waking moment with Vera Kate as we weren’t sure what the future would hold.

On Monday, February 22, they came and took Vera Kate away for surgery, another hard moment for us. After four hours of surgery, we got the call that everything went well, her heart was fixed and she would be down soon for us to see her but to be aware they left her chest open to allow for the swelling to go down. The sight of your child after a serious surgery, much less open heart surgery, is a sight I can’t even explain with words. I kept telling my husband that “she doesn’t look real, she looks like a doll.”  Despite her condition, we stayed with her, talked to her, held her tiny hand and stroked her head all the while assuring her that she would be okay. Her tiny walnut sized heart was fixed.

Tuesday, February 23, the daytime nurse noticed that Vera Kate’s coloring was off meaning that her top half was pinker than the bottom half. Her face and left arm were very swollen but we were told she may have swelling in her face due to the bypass machine she was on during surgery. They successfully closed her chest and started to investigate her discoloration. They determined that Vera Kate had a blood clot in her neck where her central line was placed. Once they removed that line, her swelling went down tremendously but she would be on blood thinners for 3-6 months to ensure the blood clot dissipated.

Thursday, February 25, they removed Vera Kate’s dressing and her scar looked really good. It was healing great. They also moved us to a regular room. The next day, they did a repeat echo and both sides of her heart were the correct size. Prior to surgery, her right side was enlarged due to pumping larger blood volumes.  During our stay in the hospital, Vera Kate had some complications with lung functioning, but thankfully they were corrected with adjustments in her treatments.

Monday, February 29, Vera Kate had her stitches removed and they removed her oxygen to let her breath on her own. They turned off her monitor so we could get used to watching her for any changes in her breathing, coloring, etc. We were quite dependent on the monitor so this was a good thing!

Tuesday, March 1, they removed Vera Kate’s chest drainage tube. She still lost a little bit of weight but they upped her formula to a higher calorie intake as she was eating very well. They gave us the good news of getting to go home on Wednesday.

Wednesday, March 2, after her morning weight check Vera Kate gained 0.9 ounces! After two weeks and two days, we were finally going home as a family of three! Once we were finally home, we became her caregivers by giving her shots and medicines. This required us as parents to work as a team, and brought us closer together than we ever thought possible. Vera Kate is the center of our lives and we cannot thank the wonderful caregivers enough for all that they did for our family.  We are so thankful that Vera Kate did not have to leave the state to have this surgery and that we were able to stay close by in our own city.  It is wonderful to have a medical facility and surgeons in Mississippi to handle these fragile, newborn heart patients.

We are also thankful to the American Heart Association in Mississippi and their valiant efforts over a three year time span to get the Pulse Ox screening to become a requirement for all newborns in our state.  It truly is a life-saving test!

 --Written by Alison Biggers, Vera Kate's mother

 

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