9 stories of families that have faced some form of Congenital Heart Defect (CHD) with their children.
Published: January 30, 2017
By: American Heart Association
The second week in February is National Congenital Heart Defect Awareness Week. More than 1.3 million Americans alive today have some form of congenital heart defect. About eight of every 1,000 children will be diagnosed with some form of CHD. CHD is an all-encompassing term for various forms of defects.
CHD doesn’t discriminate. The cause of most heart defects is not known. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects, according to the American Heart Association. They are likely due to a combination of multiple genetic and environmental factors.
That’s why it’s critical that all parents are aware of the risks of CHD so they can be prepared if their child experiences symptoms. While there’s still much to learn about CHD, scientists and physicians are making progress in the diagnosis and treatment of defects, thanks to research funded in part by the American Heart Association.
For many families, their child’s diagnosis of congenital heart defects (CHD) can be met with a lot of unknowns. The American Heart Association provides numerous resources, emotional and otherwise, for families who are going through the process and raises awareness for all types of defects. To learn more about the AHA’s educational role in CHD, visit their website: heart.org/CentralAlabama. The American Heart Association also is heavily involved in research efforts.
Emotional support is a critical need for CHD families. The American Heart Association works to connect patients and caretakers through their online network, Patient Support Network, as well as assisting local support groups. To learn more about the Patient Support Network, visit SupportNetwork.heart.org.
The following families have faced CHD with their children, and now work with the American Heart Association to help others
Hannah, 4, Clay
Hannah was born in 2012 without any known issues. Yet for her first five months, Hannah struggled to put on weight, but her pediatrician couldn’t find any real issues. At five months old, Hannah caught a cold that just wouldn’t go away; when they took her to the doctor again, the pediatrician noticed she had blue lips. They rushed her to the hospital, where tests showed she had an AV Canal defect along with other concerns.
Because doctors couldn’t help Hannah while she had a cold, she had to wait three weeks before they could do a diagnostic catherization, making her heart weaker and weaker. After doctors performed the catheritization, Hannah went into sudden cardiac arrest in the middle of the night. Her heart stopped for 47 minutes.
“We almost lost her,” Randy Wilson, Hannah’s father, said. “The medical team performed CPR on my daughter for almost an hour to resuscitate her. We are so thankful they knew what to do, and we know that the research into pediatric CPR was funded by the American Heart Association.”
Once Hannah’s heart stabilized over the next two weeks, she underwent heart surgery to repair the defect. While she went home six weeks post-surgery, her family was devastated to learn she was having infantile spasm seizures likely caused by the loss of oxygen during sudden cardiac arrest. Fortunately, Hannah was able to be treated and has been seizure-free since. She is also going through an early intervention program that helps her catch up in her development.
“Moving forward, she is now a super energetic, happy, independent and healthy four year old – an inspiration for all who know her,” Randy said.
Jeremiah, 1, Trussville
James and Crystal Burford were excited to be halfway through their third pregnancy. They went to their doctor for a regular checkup, but little did they know it would be the last ordinary checkup for their son Jeremiah, who would be born fighting for his life.
During the appointment, a scan revealed a severe congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS). Only 1,000 babies a year are born with the condition, and 35 years ago, it would have been a death sentence. Thankfully, Jeremiah was born in a time when more than 75 percent of HLHS babies survive the diagnosis.
“Early screening is a must to ensure that you can diagnose defects early,” James Burford says. “We are so thankful that technology was available early in our pregnancy so we and the medical team had time to prepare for his delivery.”
Jeremiah spent the first four months of his life in the hospital hooked up to machines. He has already undergone two open heart surgeries in his year of life, and will have to undergo another within the next two years to correct the defect.
Georgia, 1, Hoover
Beaux and Taylor Haynie’s daughter Georgia was diagnosed at 20 weeks in utero with an unbalanced atrioventricular (AV) canal defect, which is a large hole in the center of the heart affecting all four chambers where they would normally be divided. The defect allows blood to mix and the chambers/valves cannot properly route the blood to each station of circulation within the heart. AV canal defects account for four percent to five percent of congenital heart defects and occurs in 3 of 10,000 babies born.
Despite her diagnosis, Georgia did extremely well after birth. She stayed in the NICU for only seven days and went home at a week old. Yet at her two-week checkup, tests showed she was in heart failure. “They had told us we would need to follow up with a cardiologist in four to six months. We never expected to go in at two weeks old. It all happened so fast,” Taylor says.
Georgia had open heart surgery in May 2016 to repair the defect. Although she was so young, her recovery went very smoothly. She’s also not expected to need further procedures, a relief to her parents. Taylor says sometimes her family forgets that Georgia was ever sick, but there is one reminder of her heart warrior’s battle.
“The biggest reminder for us is her open heart surgery chest scar. It reminds me of how special she is. She is a heart warrior, and she is stronger and braver than I could have ever imagined,” Taylor says.
Zaidan, 2, Birmingham
Zaidan was diagnosed at 20 weeks in utero with an extremely complex form of congenital heart defect, hypoplastic left heart syndrome (HLHS). HLHS means that the left side of Zaidan’s heart was severely underdeveloped and he would need three open heart surgeries. Zaidan underwent his first procedure at just days old. While the open heart surgery was considered successful by his medical team, Zaidan experienced a heart attack just days later. The heart attack had weakened his heart muscles past what his heart could take, and doctors said he wouldn’t survive without a heart transplant.
“I can remember him having IV pumps and meds. It was just so much – very, very overwhelming. And there was a point just being honest where I thought he won’t be able to survive this. He was just a newborn baby and I didn’t know how he could survive this,” Marquita Smiley, Zaidan’s mom, said.
Doctors were able to find Zaidan a new heart and he flourished. While he will likely have to have a second heart transplant as an adult, he is a normal toddler in almost every other way now.
Marquita’s family hosts a community team each year in Zaidan’s honor for the Birmingham Heart Walk, raising funds and awareness for the American Heart Association’s mission to build healthier lives, free of cardiovascular diseases.
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Beaux, 4, Hoover
Shellie and Lauren Waites couldn’t wait to meet their new baby boy in 2012. The Waites had done the regular prenatal tests, and doctors had no concerns. Everyone expected Beaux to be a healthy, happy baby, but just minutes after he was delivered, he was whisked away to NICU.
They had no idea what was happening until a doctor informed them that Beaux had been diagnosed with Down syndrome, pulmonary hypertension and multiple heart defects, including an atrioventricular canal defect (AV). Half of all babies born with Down syndrome also have an AV canal defect. Beaux would need open heart surgery before he was six months old. Lauren says the news was shocking not only to her and her family, but to their doctors as well.
“Our OB even went back after finding out to double check all the tests and scans, and still couldn’t find anything. It was definitely God’s plan to keep him a special secret to us until the time came,” Lauren says.
The surgery had been complicated, repairing a valve and patching three holes in Beaux’s heart. Beaux stayed in a heart block for seven days after the surgery, meaning his heart wasn’t able to beat in rhythm by itself. Just before doctors were about to go in and put in a pacemaker, his heart started working all on its own.
“His charge nurse said they had never seen a heart come out of heart block so far from surgery before. It was a good thing I had pushed for surgery as early as possible because we later found out his heart was enlarged and filled the whole chest cavity. He was in fact in heart failure. That’s one reason why I think it’s so important to advocate for your health,” Lauren says.
At his most recent cardiovascular appointment, Beaux was cleared to only receive heart checkups once a year. Beaux still has moderate leaking in his right valve, a mass growing in his mitral valve, and will need another heart surgery around 10 years of age. Yet, his parents are so thankful and say he is living the life that they never thought he could have.
Gabrielle Bolden, 8, Birmingham
A few months after Gabrielle was born in April 2008, she was diagnosed with pediatric myocarditis, an inflammatory disorder of the heart muscle caused by a viral infection. The disease was successfully managed by medication and periodic hospitalizations until April 2015 when she caught RSV, a respiratory virus. But Gabrielle couldn’t seem to recover and doctors ultimately performed a heart catheterization. The cath revealed that the right side of her heart was severely damaged with all her other major organs enlarged.
After several months in the hospital, Gabrielle was placed on the heart transplant list and began what was expected to be a long wait. Her family decided they wanted her to live as normal a life as possible as she waited for a new heart and let her start school in August 2015.
Surprisingly, just a few days into the school year, Gabrielle learned a new heart was available. Surgery and recovery went smoothly and the feisty second grader was home two weeks after the transplant, ready to make up for lost time.
Jack, 5, Jasper
Jack was born with hypoplastic left heart syndrome (HLHS), one of the most complicated congenital heart defects. HLHS essentially meant the left side of Jack’s heart was severely underdeveloped. Children with HSHS normally undergo three separate open heart procedures. Jack had his first open heart surgery (called a Norwood procedure) at just a few days old, a second open heart surgery (called a bidirectional Glenn) at four months old, and his last open heart surgery (the Fontan procedure) in May 2016. Jack’s mom Crystal Odom says there was so much hope and fear wrapped up in his final open heart surgery.
“When my husband Josh and I rounded the corner to see Jack the first time after his Fontan, my heart sang. My baby. Finally alive and done with surgery. It just proved to me that God still performs miracles,” Crystal says.
While these procedures pushed Jack and his family to their limits – both physically and emotionally – doctors are hopeful that Jack will lead a normal life with few limitations and isn’t expected to need any more surgeries.
Harper, 3, Dora
“Looking at Harper, you would never know anything was wrong,” Harper’s mom, Jenna Hill, says. At just a week old, the pediatrician detected a heart murmur and low oxygen levels at Harper’s regular checkup. Further testing revealed a shocking diagnosis of multiple heart defects, including a single ventricle and pulmonary stenosis.
“Thirty years ago they would have told us enjoy your baby; you’ve got two years with her,” Harper says. After an open heart surgery before her first birthday, Harper’s heart is repaired but not fully fixed. She may need more surgery later in life. Her family is always on a mission pushing for more research and funding.
Congenital heart defects cannot be prevented, and anyone can be at risk for CHD. Survival rates for all congenital heart disease is greater than 95 percent, up until 18 years of age thanks to the advancement of technology and research funded in part by the American Heart Association.
Tiffany, 29, Pelham
Tiffany Chance Bell was so excited to be a new mom again. She had just had her second child and was adjusting to being a family of four when she began experiencing chest pains, shortness of breath and an irregular heartbeat. Because she had been educated on warning signs of heart attacks for women by the American Heart Association in the past, Tiffany and her husband followed AHA’s advice to go to the ER immediately. When she arrived, ER doctors told her all her tests were clear and attributed her symptoms to her being postpartum.
But the symptoms got worse. So she returned to the ER for more tests, but doctors still couldn’t find anything wrong. After a few more trips with no answers, Tiffany visited a cardiologist and asked for a full workup. That’s when doctors discovered a hole on the top of Tiffany’s heart – a congenital heart defect that had been undetected since birth.
“I was shocked. I didn’t think an adult could be diagnosed with CHD since it’s something you’re born with. But my pregnancy had enlarged my heart and started causing heart symptoms for the first time in my life,” Tiffany says. “I was so thankful that I continued advocating for my heart health even when no one could figure out what was wrong; it’s the reason I’m alive today.”
Courtesy of the American Heart Association.