Beating the odds against CHD: Peyton Peart

This is the final post in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.

By Jessica Peart

Peyton was born on March 4, 2014. Slightly after the 24-hour mark, a nurse entered our hospital room and told my husband and I that Peyton had been rushed to the Neonatal Intensive Care Unit (NICU) for complications due to erratic breathing and heart rhythm.

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We waited six grueling hours before we could see her. We were horrified to find IV’s coming out of her head and were informed that Peyton had been diagnosed with Ventricular Septal Defect (VSD), a heart defect caused by an abnormal connection between the lower chambers of the heart. In Peyton’s case, she had two holes, one small and one rather large.

Peyton was discharged from the NICU after three days and we were given strict instructions by her cardiologist to go home and love on her and try not to worry…too much. That’s just what we did! A follow-up appointment two weeks later confirmed the holes were still present, but surgery was not necessary.

Peyton visited her cardiologist routinely over the next three years. At the age of three, we were thrilled to hear both holes had closed on their own. However, we were faced with a new condition, Left Ventricular Non-Compaction Cardiomyopathy (LVNC). From what we understood in layman’s terms,AmericanHeartAssn-47 when LVNC occurs, the heart muscle is sponge-like, rather than smooth and solid. Once again, we were told not to worry…too much, but Peyton’s heart would continue to be monitored.

Peyton is getting ready to celebrate her fourth birthday with a Super-Man themed party. She is fortunate to have never undergone any surgical procedures like so many other children and adults who have been diagnosed with a congenital heart defect. Still, my husband and I celebrate her and her journey every day! No matter the complications, Peyton has a big heart! She’s a strong-willed and caring little girl with a vibrant personality, who loves animals, dancing, tumbling, singing, performing and most of all, her family and friends. We cannot wait to see where life takes her.

Why?! Peyton is our Why.

AmericanHeartAssn-40Special thanks to Hendricks & Company for donating photo services for this project.

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Beating the odds against CHD: AJ Burgess

This is the fourth post in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.

By Tracye Burgess

I had an almost perfect pregnancy. My water broke at 8:30 a.m. Sunday morning, on MarchAmericanHeartAssn-56 22, 2009.  Nervous and excited at the same time, my husband got us to Methodist Germantown in 5 minutes; I was admitted and taken to Labor & Delivery.  After a couple of hours of monitoring and receiving an epidural, things seemed to be going fine; then all of a sudden, the nurse noticed that my baby’s heart rate started dropping, she alerted the doctor things changed I had to have an emergency C-Section.

As I was being prepped to go into the OR, I could not help but to start crying because we had no idea what could be going wrong, all we knew he heart was dropping.  At 3:08 pm our baby boy Andre (Aj) Burgess, Jr. was delivered via C-Section.

We knew something was wrong.  He was in distress. His skin was blue, and he was immediately taken to the NICU (Newborn Intensive Care Unit to be seen by Cardiologist on call; Dr. Wetzel).  After a while, Dr. Wetzel came to my room and spoke with my husband and me. He informed us that AJ had a Congenital Heart Defect and he was being transported by the Pedi-Flight Team to Le Bonheur for heart surgery.  Our hearts dropped and to say that we were shocked was an understatement.  But I knew my baby was in the best of hands and I was confident of the outcome because I worked at LeBonheur in the Heart Institute with a team outstanding cardiologist and cardiothoracic surgeons who care for children with congenital heart defects.

 

“Who would have thought my child would be a heart patient?”

AmericanHeartAssn-34All of a sudden, I became the parent and not the employee full of questions, concerns, thoughts and fears.  As a parent, I was scared. For the first time, I wasn’t an employee. I was a parent. I understood immediately what parents feel.

“How did this happen?”  “What did I do wrong?”  “Is he going to be okay?”

I was very sad because I could not go with AJ because I was recovering from my C-Section, not only did I not get a chance to hold him in the delivery room, but I was not going to be able comfort, or hold him during this critical and scary time.

Once at LeBonheur, the cardiologist discovered that along with having a heart murmur, he had severe Pulmonary Valvular Stenosis which was obstructed causing the right ventricle not to be able to pump sufficient blood flow to his pulmonary artery which helps to maintain normal oxygen saturation.  Hence the him being blue at birth (low oxygen levels in his blood). As result of this is what alerted the cardiologist that AJ required immediate attention and treatment.

When he was less than 24 hours old, I received a call from Dr. Waller (who I worked for)explaining to me what was going on with AJ. He needed my consent to repair the right ventricle of AJ’s heart by doing an invasive procedure called a balloon dilation in the Cardiac Cath Lab.

At 10 AM, Dr. Waller was able to perform the valvuloplasty.  AJ spent two weeks in the CVICU (Cardiovascular Intensive Care Unit), as he was still having issues with his saturation.  I was discharged and able to be with my baby three days after his birth.  Seeing my sweetheart hooked up to all these wires, laying there helpless just made my heart dropped, but I knew that he would be OK and he was being well taken care of.  I was unable to hold him at first, but when I was able to hold him close to my chest for the first time, I can’t express the words or the feeling.

He spent an additional week in PICU and he was able to be leave the hospital, he would continue to be monitored very closely and follow up with Dr. Waller.

 

At AJ’s follow-up appointment with Dr. Waller at seven-months-old, he saw that AJ was still having issues with the blood flow pumping correctly.   Hearing this, I was devastated because that meant that AJ would have to go back into the Cath lab to have another balloon dilation.  So just turning 8 months old, AJ was scheduled to have another valvuloplasty (balloon dilation) on November 8, 2009.  Dr. Waller entered our room at the hospital, the look on his face was enough for me to know everything did not go as he planned and hoped.  He broke the news to us that after two unsuccessful attempts at valvuloplasty procedure in the Cath Lab, AJ would need have open heart surgery to correct the problem with the blood flow to his heart.

My heart just shattered into a million pieces. No parent wants their child to go through this.  But I knew God was in control and once again I knew the doctors would take care of AJ.

On November 9th, AJ had open heart surgery.  Everything went well, he spent a week and a couple of days in the hospital.  We are forever grateful to the team of the Heart Institute AmericanHeartAssn-52and I am thankful for worked there for 10 years.  They are our family and my co-workers.  It is a blessing to be able to share our story as a professional and as a parent as I have been on both sides of the table.  To provide comfort to the parent who is all over the place about their child having to have heart surgery is an honor and a blessing.  It feels good to say, I understand how you feel and share with them what we went through.

Today, AJ’s a happy, energetic eight-year-old 3rd grader.  He attends Downtown Elementary. He enjoys school and having fun with his friends and family.  He went to Cardiac Kids Camp for the first time last summer and can’t wait to go this summer. To look at him, you would not know what he has been through.   He will eventually will need to have his valve replaced in a few years because he will outgrow the repair done at when he was a baby.   Dr. Waller is sees him for his yearly follow-ups and watches him closely and I know when the time is right he will be well taken care of.

We are so thankful as parents of a CHD child to be able to share our story and bring awareness to our community.  We are grateful for the American Heart Association giving us this opportunity.

Special thanks to Hendricks & Company for donating photo services for this project.

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Beating the odds against CHD: Oliver Hendricks

This is the third post in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.

By Erin Hendricks

Oliver turned our family into a family of four. He instantly had a best friend in his big AmericanHeartAssn-31sister, and was rarely without someone attempting to pick him up and play with him often. He was born healthy and sent home within the first 72 hours of entering the world.

The fall before Oliver’s first birthday was the beginning of Oliver’s heart story. He had met all the milestones we knew to look for and proved himself to be a very happy, easy-going “little man”. In the ten months Oliver had graced us with his presence he had been a generally healthy kiddo with the exception of a sniffly nose here and a  irritated throat there. October changed that dramatically. Patterns began to show in the frequency of the fevers and the rasp in his voice didn’t seem effected by the medications the doctors were prescribing.

After multiple frustrating visits to our pediatrician, and with no more understanding of why Oliver would not get better, we found our selves at Lebonheur. X-Rays the first time we went to Lebonheur did not give us more answers and the frustration increased. We could not get the fevers to stay away, and Oliver’s lack of weight became more and more prevalent as his younger cousins began passing him in size. Thankfully, the doctors of Lebonheur were determined to understand why we couldn’t kick the crud.

AmericanHeartAssn-50A week before Christmas, Oliver was scheduled for additional x-rays and more testing in hopes of clarity. Clarity is exactly what we got that visit. An x-ray of Oliver’s chest revealed something that was not clear on the x-rays prior. The pictures showed Oliver’ symptoms were the result of a double arching aorta complexed with double rings wrapping around his trachea. The rings restricted his air flow causing the rasp in his voice when he spoke, along with the difficulty in swallowing we had not connected to all of the fevers and symptoms he had shown. We left the hospital that day knowing we would face heart surgery and never knew how humbled we would be.

Two days after Christmas we wheeled Oliver around the hallways of Lebonheur in a AmericanHeartAssn-44little red wagon and read all the inspirational words that were left by previous and current patients. We prayed, we reflected, and we prayed some more.

We were so thankful for a smooth surgery and doctors that took the time to explain each and every step of this scary moment in our lives. Oliver spent two days in ICU and recovered a third day on a less restrictive unit. We were sent home with positive vibes and the promise that all would be better. And so thankfully, all has been better. Oliver recently went for a check up where we were reassured that there should be no further complications with his heart defect.

We learned a lot in those few months. We learned to stay patient; we learned that the Lord provides – a precious babysitter, a determined team of nurses and doctors, a sweet child-life specialist that explained things to sister that mommy didn’t know how to, and family  and friends that never wavered from our sides. We know of other heart stories that do not end the same way. For those families, for those effected, Know you are not alone; know you are in our prayers and we have shared in your fear.

Special thanks to Hendricks & Company for donating photo services for this project.

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Beating the odds against CHD: Aspen White

This is the second post in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.

By Leah White

My daughter, Aspen White, came into this world on October 9th, 2010. From all appearances she seemed like a healthy baby girl. However, the doctors did hear a heart aspen whitemurmur. The hospital ordered an ultrasound, but they were not overly concerned due to her normal oxygen level. After the ultrasound, the doctor asked us to sit down. He gently told us that Aspen did not have a pulmonary artery, and that the source of her blood flow was unknown at this point. We went from having our bags packed to go home, to a flight team rushing in, packing our baby girl up in a plastic box and rushing her off to LeBonheur Children’s Hospital. My husband and I were desperately trying to make sense of what was happening. Our bodies were quickly going into shock. We were in our first stage of grief.

After a heart catheterization the doctors were able to see that she was surviving without a pulmonary artery because her body had created its own unique path for blood flow, but it wasn’t permanent. The doctors and surgeons agreed to wait and allow her body to AmericanHeartAssn-21grow as much as possible before performing surgery. They sent us home with a machine to check her oxygen daily. We also were assigned a home health nurse that made weekly visits to monitor her condition. By the time she was five months old, her oxygen levels had gone from the high nineties to the sixties and her little hands and feet were beginning to turn blue. The doctors determined it was time for open-heart surgery.

Her surgery was a huge success! They were able to construct a pulmonary artery and make other necessary repairs. With these repairs her oxygen levels returned to normal as her blood began to flow through normal passageways. Since then she has had heart AmericanHeartAssn-17catheterizations that are considered maintenance work, such as stints, angioplasty, and coiling off of arteries that are no longer needed. Heart catheterizations will always be a part of her life.

When Jason and I first found out about our daughter’s heart condition it was all negative in our minds. We just wanted our daughter to have a normal full life. We went through all the stages of grief. At first all we could see for our little girl was having to battle this heart condition that would slow her down and possibly shorten her life.

We couldn’t have been more mistaken! Not only is it clear that Aspen has an extremely bright future, but she brightens everyone else’s world that knows her. And nothing, absolutely nothing, is going to stop her from doing whatever she sets her mind to do. Yes, Aspen has a heart condition … but because of some incredible doctors, an amazing hospital, and countless prayers, she lives a very active life. Honestly, she could run circles around the average person! Sometimes she reminds me of a beautiful, wild tornado, and when she touches down, it feels like you are the one who has the heart condition and not her! She plays basketball, swims, runs, jumps, spars, hikes, does gymnastics, taekwondo. Nothing stops this child!

AmericanHeartAssn-19Aspen’s heart condition is not a curse. One thing we have learned for sure is that even when bad things happen, blessings can come from it. One of the biggest blessings from Aspen’s heart condition is how it has played a part in shaping Aspen’s personality and character. She is a superhero. We call her our princess warrior. Shakespeare’s words describe her well. ”Though she be but little, she is fierce.”

Aspen is strong and brave. She is not afraid to be different. She can overcome obstacles. She is optimistic, and always manages to find the rainbow. She is happy and loves life. My daughter sings every day of her life. Joy literally overflows from this little girl. She is the most beautiful example of the power of prayer I will ever see. She has taught me more in her short life than I will be able to teach her in a lifetime. One thing I know for sure is that this world is a better place because Aspen White is in it.

Since Aspen’s birth, my eyes have certainly been opened to how many children are born with congenital heart defects. I believe that every child is special. But there is something about these children who come into the world fighting for their lives; they can bring something unique and special to this world that we can’t. What a blessing it is to know that we have organizations like the American Heart Association that commit themselves daily to helping all the special children like Aspen born with heart conditions. Because of their efforts stories like Aspen’s are possible and without them so many stories would be cut short.

Special thanks to Hendricks & Company for donating photo services for this project.
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Beating the odds against CHD: Bianca Spencer

This is the first post in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.

By Bianca Spencer

I was born on June 14, 1994 to two wonderful parents, but at two days old the doctors infor

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med them that I had complications breathing due to my heart having two holes in it. My mom told me that it was hard for me to drink from a bottle and that I would get extremely tired. My parents told me they didn’t know what else to do but pray. We had a very strong support system that helped my mother and father do whatever needed to be done when they needed help.

Although I was very sick leading up to the time of my surgery my parents not only cared for me but for my older brother as well. It was a very difficult time for them as they juggled having such a sick infant and keeping life regular for an active toddler. At the time, my brother wasn’t really sure what was happening with his baby sister. After monitoring me in and out of the hospital doctors concluded that I’d have my heart surgery by the time I was 11 months old.

bianca babyI had an Atrial Septal Defect Surgery and a Ventricular Septal Defect Surgery to patch up and close the holes. My mom said I later had congestive heart failure at some point, but in the end, I overcame everything. Through everything my parents remained strong. I believe that their strength helped me to fight and stay strong during this surgery. Thankfully, I recovered and was able to achieve a lot of things that doctors didn’t believe I would ever achieve.

As I became older my parents were very wary at how active I was. I was always on the go. After such a troublesome beginning my parents weren’t quite ready to let me be too independent without being aware of any change in my heart. At the slightest chest pain or tingling I had to alert them. We were very cautious in case there was ever an issue we needed to figure out. However, I have a clean bill of health with the exception of minor allergies and asthma. As a kid I never really acknowledge that I had a huge scar that adorned my abdomen; I knew it was there but to me it was just a “zipper.” I never saw it as a hindrance. But getting older I do realize that this is just a battle scar of one of my toughest battles.

Fast forwarding, writing this was so strange because my venture started at such an early age. I only had accounts that my mom retold me. I only had the memorized response I bianca nowlearned when I was younger, “I was born with two holes in my heart and had heart surgery at 11 months old.” From the young heart survivor to the young lady that I’ve become today, it seems so surreal.

I was able to graduate Whitehaven High School in 2012. I recently graduated Middle Tennessee State University with a B.S. in Multimedia Journalism and a Minor in Dance in 2016. Now, it’s 2018 and I turn 24 years old in June. I’m working full-time while trying to prepare to return to school for a Master’s program. I dance, I cook, I draw, I exercise, and I do all the things that my family and support system were afraid I wouldn’t be able to do. I’m blessed to have the supporters that I do behind me and I’m doing everything I can do to ensure my heart stays healthy. Having heart surgery will forever be a big part of my life story but I am thankful that I can help others know that they can not only survive heart disease but they can thrive in spite of it.

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Sodium reduction made simple with basic meal-time changes

From processed meats in your local deli to cheeseburgers from popular fast food restaurant chains, the diets of American households are loaded with sodium. In fact, the average American consumes more than 3,400 mg of sodium per day, which is significantly higher than the American Heart Association’s recommendation of 1,500 mg per day.

Why all the fuss about sodium?

Diets high in sodium are linked to an increase in blood pressure and a higher risk for heart disease and stroke. Cardiovascular disease continues to be the leading cause of death in all Americans, and stroke is the 5th salt-91539_960_720leading cause of death and a top cause of long-term disability.

The American Heart Association estimates that if the U.S. population reduced its sodium intake to the recommended 1,500 mg per day, there would be a savings of more than $236 billion in healthcare spending and a 25.6 percent decrease in the prevalence of high blood pressure. That would be a huge impact on our local community, where one in three residents suffer from high blood pressure.

Sodium reduction is easier than many may think. To help get you on the track to a heart-healthy diet with the correct amount of sodium, follow these few, simple tips when preparing meals and making decisions in the grocery store.

Avoid over-processed deli meats.

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It may be easier to pick up the prepackaged turkey from the meat department at your local grocery store, but many processed meats contain exorbitant amounts of sodium due to the salt added to maintain its freshness.

For a healthier alternative, look to your fresh-cut deli meats. Local grocery stores offer a variety of options, including deli meats that have been certified heart-healthy by the American Heart Association. Just look for the heart healthy check mark on the packaging.

 

Read the nutrition labels.

There is nothing more important when making a healthy decisions than reading the nutrition label. Sodium can go by many names when listed on a label, so look for salt, sodium benzoate, disodium or monosodium glutamate when factoring how much salt is in a product.

Common foods loaded with sodium include canned goods like beans and tomatoes, prepared salad dressing, condiments and even some soups. When shopping, look for products that are listed as low-sodium or reduced sodium.

The closer to nature, the healthier the product.

While it may be easier to pick up canned vegetables, many of these items are canned in a sodium solution to retain flavor and extend the product’s shelf life. The best way to prevent needless sodium in your diet is to prepare fresh vegetables instead of canned. An easy alternative to fresh vegetables would be frozen vegetables, which have no sodium. If the only option is canned, drain the sodium solution and rinse with water before preparing the vegetables in water. Doing this can reduce the amount of sodium in the product by 40 percent.

Try low or no sodium spices to add flavor to your meals.

There are plenty of alternatives to salt that can help add great flavor to your meals. Basil, curry powder, onion powder, paprika and parsley are great additions to fish and lean meats. Chives, garlic and dill also add flavor to soups, vegetables and other side dishes.

For a sweeter seasoning, try adding cinnamon to fruits, breads and pie crusts. Ginger, nutmeg and peppermint extract also go well with fruit.

 Keeping up with small changes in your sodium intake will lead to a significant reduction in sodium consumption over time. For more information about the American Heart Association’s sodium recommendations, visit Heart.org/Sodium.

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GUEST BLOG: Wonderful Watermelon – Summer’s Favorite Food

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By Angela Stancil, MS, RD, LDN

Summer is a time for enjoying the great outdoors, finding new adventures, and enjoying light and refreshing summer foods. When temperatures rise, what’s better than a cool and refreshing treat? Composed of more than 90 percent water, watermelon is the perfect fruit for keeping cool and staying hydrated.

Celebrate Watermelon Day on August 3rd and impress your friends with these fun facts about a favorite summer treat.Summer is a time for enjoying the great outdoors, finding new adventures, and enjoying light and refreshing summer foods.fruit-2367029_1920

  • Watermelon belongs to the botanical family Curcurbitaceae and is the most consumed melon in the United States.
  • The first recorded watermelon harvest occurred 5,000 years ago in Egypt.
  • Watermelons grow in more than 96 countries around the world.
  • China is the number one producer of watermelon worldwide.
  • 44 states in the United States produce watermelon each year.
  • Watermelon is an excellent source of lycopene, a naturally occurring compound that is thought to decrease risk of developing heart disease and certain forms of cancer.
  • Watermelon is also a great source of fiber, potassium and vitamins B6, A and C.
  • Watermelon is a low calorie food.
  • A two cup serving of watermelon is only about 80 calories!
  • Every part of the watermelon – including the rind and seeds – is edible.
  • Watermelon typically weight between 5 and 50 pounds. The Guinness World Record holder for heaviest watermelon is Chris Kent of Seiverville, Tenn., with a watermelon weighing 350.5 lbs!

Ready to indulge? Here’s how:

  1. Look for a firm, symmetrical melon free of cuts, dents and bruises.
  2. Lift it – it should be heavy for its size.
  3. Check for a rich yellow spot on the underside. This is where the melon sat and ripened.
  4. Bacteria can be transferred from the outside of a melon to the inside once it’s cut. Avoid spreading bacteria by washing your hands and the surface of the melon before cracking it open.

This summer, try a new way to prepare and serve this delicious fruit. Check our the American Heart Association’s recipe library for several watermelon-friendly recipes here.

 

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