Faces of CHD - Meagan & Sadie

February 14th is not just for Valentine's Day, it is also National Donor Day.  National Donor Day is a time to focus on all types of organ donation, as well as to recognize loved ones that have have given the gift of life through organ donation, have received a donor organ, and are waiting for or passed away waiting for a donation.  The need for heart transplant is always a possibility for people affected by congenital heart defects. 

Thankfully significant advancements in CHD research have occurred over the past several decades.  The number of adults living with congenital heart defects is increasing due to improvements in survival.  It is now believed that the number of adults living with CHDs is possibly higher than the number of children living with congenital heart defects.  

Heart Hero - Meagan

I was born with HLHS, TA and VSD in 1990.  My parents had no idea what to expect.  The doctor told my parents they had two choices:  1. Take me home and let me die on my own or 2. Try three experimental surgeries.  They decided on the surgeries and I am thankful they did.  I am now 26 years old, living life to the fullest.  I am currently living in Florida working as a preschool teacher and working on my Masters.  I honestly don't remember being in the hospital.  All I really remember is the stories I was told by my parents and the photos I've seen.  I was very shy and didn't really get to know others and thought I was very different than other kids my age.  I was ashamed of my scar for the longest time, but not anymore!  I had feeding tubes which hit my vocal cords and changed my voice a little so I was constantly asked "What's wrong with your voice?" or "Are you sick?" and I usually respond with no or I tell them I had three heart surgeries.  It's hard at times, but now I just want people to understand.  I was scared of what people thought of me, but now I am happy that I am who I am.  My CHD doesn't define me, it's just a part of my life.

Heart Hero Sadie

Born in 1997 with Hypoplastic Left Heart Syndrome, Sadie had her first open-heart surgery at 9 months old.  Later at 9 years old she needed another surgery to repair her heart.  In between those two surgeries, and after her second surgery, Sadie lived a normal life.  After graduating high school, Sadie moved to New York to pursue her passion as an actress.  While studying acting at the Lee Strasberg Institute of Film and Theatre, she began experiencing symptoms of heart failure.  After returning to Children's of Alabama, Sadie ended up on the heart transplant list.  Within several months, Sadie was matched to a heart donor and received her gift of life.  Sadie is currently doing well and is continuing to pursue her dream of acting.

Faces of CHD - Jase & Hudson

One thing that I believe most people affected by CHD's would like other people to know is that there is no cure for severe congenital heart defects.  The surgeries are not a fix and people born with a CHD will face a lifetime of cardiologist appointments, medications, heart caths, possibly additional surgeries/transplant, etc.  People with CHD's face increased risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.  The medical advancements in managing complex congenital heart defects are significantly better than they were just a few decades ago, and hopefully will continue to improve daily.  There is a long way to go, but I believe together we can one day find a cure for CHDs.

Heart Hero Jase 

Jase was born on August 22, 2013 with Hypoplastic Left Heart Syndrome.  Unlike many people that find out in weeks eighteen to twenty-two of pregnancy, we found out during discharge three days after Jase was born.  His oxygen levels dropped after circumcision and he never recovered.  The rush of becoming a parent and being on that high after his birth was met with something that no parent is prepared for, the reality of your three day old's mortality.  Fast forward through a Norwood with a late night six revisions, four days on ECMO, a week with an open sternum, two heart catheters, a Bi-Directional Glenn, and two and a half years later, Jase is doing great.

He loves anything to do with fish, cars, and Rocket from Little Einsteins.  He runs around (albeit he turns blue when he does causing everyone other than his parents to panic, but he doesn't seem to mind), swims, flies everything that might possibly be an airplane, and wrecks everything that might possibly be a car.

Looking back over the past two and a half years there are two things that stand out.  The first is that God will always give you the strength and comfort to face whatever comes.  That might be in the form of people who are going through the same things you are; doctors, nurses, or friends that you haven't seen in years.  The second is that when you see your child's heart beating through what seem like yellow Reynold's wrap, you don't take for granted how awesome getting up at 3:00 AM to watch the VeggieTales can be.

Heart Hero Hudson

At 20 weeks pregnant we heard the words no parent ever expects to hear.  There is something wrong with your child's heart.  It's hard to even explain how much my life changed that day.  After hearing numerous scary terms I had never heard before, it was finally determined that Hudson had Critical Aortic Stenosis that would ultimately progress into Hypoplastic Left Heart Syndrome as well as Pulmonary Artery Stenosis.  We were given four options:  a 3-stage palliative surgical repair, wait for a possible heart transplant at another cardiac center (our local children's hospital doesn't start off with transplant), comfort care after birth until Hudson passed away, or an abortion.  We definitely wanted to give Hudson the best chance at living a great life, and after talking with our cardiologist and learning about people in their 20's and even early 30's with HLHS, we decided to move forward with the 3-stage repair.  The Norwood surgery (the first surgery of the repair) was not invented until the early 1980's so there are no living survivors of HLHS older than early 30's.

Even though he was born full term, like many CHD babies Hudson was pretty small at birth.  Hudson had his first open-heart surgery, the Norwood, at just 2 days old.  It was very touch and go after that surgery and we almost lost Hudson several times.  Thankfully after a month in the hospital we were finally able to go home on oxygen.  At 3 months old Hudson had his second open-heart surgery, the Glenn.  It seemed to go well at first and we were discharged within a week.  However a few days later we were back due to a surgical complication called a chylothorax.  Hudson struggled with this complication, and we were in and out of the hospital for months.  Finally on Valentine's Day 2014 at our cardiologist appointment we got the great news that the chylothorax was completely resolved.

After that, we tried to transition into normal family life and focus on the future.  Hudson was growing and thriving.  We celebrated small victories like they were the biggest things in the world, because to us every victory felt like a miracle.  I remember for Hudson's 1st birthday I went crazy because I was just so thankful that he had made it to 1 year because there were times that we never thought we would see that day.  Hudson was an incredible little boy...smart,funny, loving, beautiful inside and out.  Looking into his eyes felt like you were looking into his soul.  He was our world and we loved him more than I thought was even capable.  On May 30, 2015 our lives were crushed when Hudson suddenly passed away from a cardiac arrhythmia.  The only thing that has gotten me through the days since his death is knowing that one day we will be together again in Heaven.  Hudson was much more than his congenital heart defect, but unfortunately that is what cut his life here on Earth short.  My husband and I are passionate about raising funding and awareness about CHDs so that hopefully one day no family will ever have to go through what we have.

Faces of CHD - Jackson & Jeremiah

Although congenital heart defects are the #1 birth defect worldwide and the leading cause of infant deaths in the US, CHD research is grossly underfunded despite its prevalence. The best way to ensure that money you give will be going specifically to CHD research and supporting families is to donate to organizations that are entirely devoted to fighting CHDs.  The Children's Heart Foundation, Mended Little Hearts, Adult Congenital Heart Association, Sisters By Heart, cardiac units at local children's hospitals, etc. are excellent organizations that support the CHD community and exclusively fund research related to congenital heart defects.  Research is so important because it is the only way that improvements will continue to be made for children and adults affected by a congenital heart defect.  

Heart Hero Jackson

This is Jackson.  He is almost 3 years old and he was born with Hypoplastic Left Heart Syndrome (HLHS).  His heart defect was detected 2 days after birth after becoming very sick and almost losing his life.  His first surgery, the Norwood, was performed at 7 days old.  The second surgery, the Glenn, was performed at 4 months old.  The third stage of the scheduled surgeries, the Fontan, will be performed this summer at 3 years old.  Jackson is a true blessing and I cannot imagine life without him.  Honestly I don't remember life before him.  Being my first child, I was extremely excited to bring him into the world.  I would have never imagined that this would happen.  Before I could even get used to the fact of being a mother, it was almost taken away from me.  I'm thankful to God that he chose me to be Jackson's mother.  He is a joy to be around and the sweetest baby boy.  There are no words for the love I have for him.

Heart Hero Jeremiah

It all started with our 20 week ultrasound; that is the day we learned that our little boy had a heart defect.  We were told that he had a condition known as Hypoplastic Left Heart Syndrome (HLHS).  We had no family history of congenital heart defects.

Jeremiah James Burford was born April 8th 2015.  The first time I looked at his sweet face it was through the clear walls of an isolate transporter.  He looked great and at 8 lbs and 10 oz, super chunky.  That extra birth weight would help him for his first surgery at just 6 days old.  The Norwood went well.  Jeremiah did have setbacks during his recovery at Children's.  His lungs collapsed 3 different times and he struggled with feedings.  We were discharged 6 weeks after surgery.  Once we were home we had several set backs with feeding that put us in the CVICU just 6 days later.  We worked on feedings and were re-released almost 3 weeks later.  Feeding and rates and pumps and bags and the Nutritionist...my head spins thinking about just how crazy it all made me.  Somehow in the middle of all the feeding issues he was still climbing up the growth chart.

By July he was 3 and 1/2 months old and we were heading in for a heart cath.  While in for that procedure we were told that Jeremiah would have his Glenn open heart surgery in a week.  My husband and I were in shock.  Jeremiah needed it and so we pushed forward.  The recovery for the Glenn was just as scary.  We discovered that Jeremiah had a condition called broncomalacia, which explained his multiple lung collapses with the Norwood and also with the Glenn.  We finally came home for good 5 weeks later.


We were told at his last appointment that he looked great.  We anticipate the final open heart surgery to be around 3 years of age.  We may have it sooner than that.  What I have learned while going through this is that there are no textbook answers.  Each child is different, and Jeremiah loves to surprise us.  We still have issues with food.  He is just now finishing jars of baby food, but I will take it!  My 10 month old boy is my hero. he is beautiful and funny and a complete miracle.    People ask me if this has changed me.  How can you not be a totally different person after this?  I am changed forever.  Loving a heart baby is a powerful, life-changing kind of love.

Faces of CHD - Jack & Talia

Many congenital heart defects remain undiagnosed until after the baby is born.  With critical heart defects this can be deadly because these babies need immediate medical support and will require open heart surgery within a few days after birth.  A simple non-invasive test called pulse oximetry can be done after birth to determine if your baby is affected by a CHD.  Pulse oximetry measures the amount of oxygen in the blood.  Currently many states do not require mandatory pulse oximetry testing on newborns.  Symptoms of a possible heart defect in a newborn include:  bluish skin/extremities, heavy/labored breathing, trouble nursing and breathing at the same time, abnormal heart rate, failure to thrive.  

Heart Hero Jack

Jack Cruz Kramer was born on 11 March 2014 with a surprise diagnosis of Hypoplastic Left Heart Syndrome.  I had many ultrasounds while pregnant, but his heart defect wasn't detected until birth.  It was apparent the minute he was born that something wasn't right.  Low oxygen saturations and a heart murmur called for an echocardiogram, and within 24 hours Jack was flown via jet to a pediatric cardiovascular unit in Birmingham, Alabama.  There, he was stabilized and our worlds were shattered with the news of his heart condition.  He underwent his first open heart surgery, the Norwood, at one week old.  He had a rough recovery, including having to be reintubated several times due to a paralyzed diaphragm.  We finally took Jack home for the first time at two months old.  After just two weeks, we rushed back to the hospital due to low oxygen saturations.  Jack was then flown to Boston Children's Hospital and underwent an emergency cardiac catheterization.  Jack then had his second cardiac cath and then second open heart surgery, the Glenn, at five months old.  At nine months old, he had his third cardiac cath to ensure his heart was functioning well and thankfully it was deemed a "happy hypoplast heart!"  Jack's next procedure will be another cath and then open heart surgery, the Fontan, this summer in Boston.

Looking at Jack, you'd have no idea anything is wrong with him.  He may be a bit small due to his half-heart burning so many calories, but he's just like any other kid his age.  He loves to be outdoors and go on adventures.  He enjoys swimming, playing with balls and cars, and reading.  He's a very social little guy with a lot of friends.  he's already lived in three states and visited 26 states.  He's proving that nothing can hold him back from an amazing life.

You can stay up to date on Jack's story on his Facebook page:  https://www.facebook.com/groups/babyjack/

Heart Hero Talia

Talia was born on March 10, 2013 with the CHD Double Outlet Right Ventricle, Mitral Valve Atresia, and Pulmonary Stenosis.  Within five hours of being born, she stopped breathing and required intubation.  I knew of her defect before her birth, but it did not prepare me for what would be the hardest year of my life.  The combination of these three defects led us to have three open heart surgeries, one of which was emergent, a Gastric tube placed, and combination of almost 6+ months in the hospital.  She was born with a cleft lip, which could not be repaired until she was a year old due to her heart complications.  Our little angel is such a warrior, having been through so much pain and suffering in such a short period of time.  Today she is a bright, strong and happy little girl.  Our life doesn't come without its struggles, but Talia inspires me every day to better myself as both a mother and an individual, because we know our days are precious and a gift from God.  We still have a long road ahead of us, with the upcoming fourth open heart and some cleft lip repair, but are optimistic about the road ahead and happy to have the hard part behind us.

Faces of CHD - Aiden & Landon

There are more than 40 different types of congenital heart defects.  Most causes of CHDs are unknown.  Only 15-20% of all CHDs are related to known genetic causes.  Congenital heart defects develop in the first few weeks of pregnancy, typically before the woman even knows she is pregnant.

Heart Hero Aiden

Aiden Clint Jeffus was born September 24, 2012 with Hypoplastic Left Heart Syndrome.  He was born at the University of Mississippi Medical Center in Jackson, MS.  He had his first of three open heart surgeries when he was eight days old (Norwood).  At six months old, he had his second open heart surgery (Glenn).  Currently we are preparing for his last of the three surgeries this summer.

You will never meet more of a people person than Aiden.  He never meets a stranger and has a personality that lights up a room.  Aiden loves all things Toy Story and Avengers, and Captain America is his favorite.  Like any other little boy, Aiden enjoys being outside and riding on his tractor.

Heart Hero Landon

Landon is my nephew.  He changed my life in 5 short weeks.  Landon was born premature at just 24 weeks.  A few days after birth he was diagnosed with several heart defects with the worst being a severe aortic stenosis which would eventually lead to Hypoplastic Left Heart Syndrome.  Landon's parents are two of the strongest people I know.  Matt, my brother, and his wife Katie never faltered.  I remember one of Landon's charge nurses remarking about Landon's feisty spirit - she said that she felt he would have many more good days than bad ones while he was at UAB and she was right.  Landon was the spitting image of his daddy.  He loved to suck on his fingers and he enjoyed his mother's voice.  He now has a perfect heart and is resting at the feet of Jesus.  I am so thankful that God gave us Landon, if even for a painfully short time.  We pray that one day no child will ever be lost to a CHD.

Faces Of Congenital Heart Defects (CHD) - Landon Jace & William

February 7-14th is recognized as CHD Awareness Week and this year I wanted to celebrate that week by showing you the faces and stories of some incredible heart warriors that we have had the opportunity to get to know along the way.  A congenital heart defect is a problem with the heart's structure that is present at birth.  Congenital heart defects are the most common birth defect and occur in a little over 1 in 100 babies.  1 out of every 4 babies born with a heart defect will have a critical CHD which will require surgery within the first few days after birth in order to survive.

Facts are so important, but they only tell part of the story.  The most important part of the story is the families impacted by CHDs; they are the stories of the children, grandchildren, friends, coworkers that were born with a congenital heart defect.  They are the stories of the children and adults fighting huge battles to survive.  They are also the stories of the children taken from this world too soon due to a CHD.  These are their stories.

 Over the next several days as I feature different children impacted by a congenital heart defect, I hope that you will see the importance of raising awareness and funds to fight against this birth defect and the reason that CHD awareness is a cause close to the hearts of so many.

Heart Hero LANDON JACE

This is our hero Landon Jace! He is 23 months old and was born with a CHD called Hypoplastic Left Heart Syndrome. We were unaware of Landon's heart defect until the day after he was born, when he was transferred because of cyanosis to a nearby hospital with a NICU. He was then given an Echo and diagnosed. Within hours he was life flighted to UMMC Blair E. Batson. He had his first of 3 surgeries (the Norwood) on March 7 at 9 days old. He had a few set backs but was finally able to come home at 21 days old. He had a few more hospital stays for various things and on June 16th he had his pre Glenn Cath. And the day before he was suppose to be admitted into the hospital for his second open heart surgery (the Glenn) we got a call from his cardiologist telling us that he was going to need a second heart Cath because his Innominate artery was severely narrowed. The bodies way of dealing with this was to grow a bunch of little veins around the artery to help pass the blood. But now the blood is going both ways through the veins instead of only traveling one way like it would through the artery. So he went in and had the second heart Cath to correct the artery. And on August 7th at 5 months he had the 2nd open heart surgery (the Glenn). He rocked this surgery and was out of the hospital in 4 days. Landon will go in next month in February for his pre Fontan cath and if all goes well should have his 3rd open heart surgery also next month right before his 2nd birthday. Landon is our HERO!!! He amazes us every day with his resilience and how he keeps his happy, loving, and energetic personality. 

Heart Hero WILLIAM

William Franklin Stroud was born with Hypoplastic Right Heart Syndrome and Transposition of the Great Arteries along with several other congenital heart defects. Even though his parents, Heather and Justin, knew about William’s heart before he was born, they had no idea how much of a fighter William would turn out to be.



At six days old, William underwent his first of three open-heart surgeries. He also underwent two surgeries, two heart catheterizations, pacemaker surgery and countless bedside procedures in order for him to have a chance at life. Through all of the surgeries and emergencies, William always showed the world that he was still fighting with his smiles.



Despite the amazing efforts of the staff at the Pediatric and Congenital Heart Center at Children’s Hospital of Alabama, William was never able to leave the hospital, living only to be four and a half months old. William passed on January 15, 2014.