Unless you or someone you love is diagnosed with congenital heart disease, you may not know much about CHD. Patients and families can face a world with untrue preconceived notions or no knowledge at all about CHD, even from well-meaning friends and family. In today’s blog, we set out to bust some of the most common myths and misconceptions surrounding CHD.
Myth: Open heart surgery or other procedures to correct CHD mean a person is “fixed” or “cured” and will not need additional interventions in the future.
“Since you have had surgery your heart is fine now right?”
“I had a congenital heart defect and had surgery to repair it. But had no idea that this is something life long.”
“Oh since his heart was rebuilt at birth, he’s all good now! You must be so relieved.”
“The heart is fixed and now it is ok to participate in regular activities. Your child is in the clear and you can rest now.”
““But she doesn’t look sick.”
BUSTED! This is one of the most common myths encountered by the patients and families impacted by CHD. Congenital heart disease is a lifelong disease requiring ongoing, specialized care. Some CHDs are relatively minor and may not require surgery or other intervention, but there are other, more severe CHDs that do require surgery or intervention in order for the patient to survive. Once a person has undergone surgery or interventions, however, it does not mean they are “fixed” or “cured.” All patients with CHD, regardless of age or CHD diagnosis, should see a cardiologist regularly throughout their lives to ensure they don’t develop complications, etc.
Myth: Patients with congenital heart defects will “grow out of them.”
“So and so was born with a heart murmur. Theirs went away, so his will too!”
“Holes in the heart are common. She’ll grow out of it. We don’t have to check on her. It will close on it’s own.”
“”It’s just a heart murmur”. It’ll most likely go away on its own. Two months after giving birth we found out differently. Resulting in multiple defects and heart transplant.”
BUSTED! While some heart murmurs are benign (sometimes resolving on their own) and some congenital heart defects are relatively mild, patients will not “outgrow” their CHD. CHD is a lifelong disease, and all patients with CHD, even some of the milder forms, should be routinely monitored by a cardiology team.
Myth: Young people can’t have heart disease.
“”How can someone so young already have heart disease?”
“Heart disease? Isn’t that something only older people have to worry about?”
BUSTED! When people hear the term “heart disease” they automatically think of coronary heart disease, heart attacks, and high blood pressure, which are forms of “acquired heart disease” (meaning something you develop over time, not something you’re born with). Acquired heart disease and congenital heart disease (something you’re born with) caused by heart defects are not the same thing, meaning even the youngest of patients are impacted. Congenital heart disease is the #1 most common birth defect – with nearly 1 in 100 impacted – both the young and the young at heart.
Myth: A heart transplant will fix any problems a patient with CHD had due to their heart defect because the new heart is normal in structure.
“A new heart will just fix all the issues”
“You can just have a heart transplant right?”
“Wow he got a heart transplant – good thing you don’t have to worry anymore!”
BUSTED! While a heart transplant may correct the underlying congenital heart defect, it does not mean… The person will need to take medications to suppress their immune system (to prevent organ rejection) and other medications for the rest of their life to control any side effects of the transplant. Furthermore, patients who receive heart transplants still need to be monitored closely by a cardiology team throughout their lifetime to watch for complications, rejection, or side effects of their medication regimen (which can include diabetes, infection, kidney disease, cancer, and high blood pressure).
Myth: Congenital heart defects only affect the heart.
“To assume a heart defect only affects the heart is a myth. The palliative procedures and different circulation create challenges that impact many parts of the body.”
“I thought it was just his heart? Why is he followed by so many other specialists?”
BUSTED! People with CHD often face a lifelong risk of health problems with body systems other than their hearts, including issues with growth and feeding, developmental delays and other neurocognitive effects, difficulty with exercise and activity, heart rhythm problems, heart failure, sudden cardiac arrest, stroke, breathing difficulties, kidney and liver failure, seizures, mental health challenges and an increased risk of cancer. The body is an intricate system of organs that are all deeply connected, so difficulties with the heart (and the necessary procedures and treatments) can lead to other problems with other body systems.
Myth: Congenital heart defects are caused by a family history/genetics, or by something the mother did while pregnant.
““He must have a defect because of something you did wrong when you were pregnant. Maybe you shouldn’t have been drinking coffee.”
“I’ve read a few times lately that they can be prevented prenatally…. which is totally false!”
BUSTED! Most causes of congenital heart defects are unknown, with only about 15-20% of them being related to known genetic conditions. While there are certainly things mothers can do during pregnancy to increase their chances of a healthy baby, at this time there are no known preventative techniques to prevent CHDs in utero – which means even if a mother “does everything right” during pregnancy, there is still always a chance of the baby developing a CHD. A family history of CHD can increase the chances of CHD, however, since a baby’s risk of having a CHD is increased by three times if the mother, father, or sibling has a CHD.
Myth: Children and adults with CHD are not able to have a “normal” or active life.
“You’ll never be able to ______. Fill in the blank. My entire life has been people telling me what I can’t, or will never be able to do.”
“That your baby can never play and do fun things like other kids.”
“He’ll never grow up to be in the Olympics or play soccer like the other kids. He’ll be low energy and probably struggle to keep up.”
BUSTED! Procedures and treatments for CHD have come a long way in the past 30 years, so more and more patients are living into adulthood. The focus of CHD care is starting to shift from helping these patients survive to ensuring they thrive. Most patients with CHD are able to be fully active in any way they’d like to be, though others may have limitations or restrictions, especially as they get older. There are a lot of examples of patients living full, active lifestyles with their CHDs, including celebrities like Olympic gold medalist Shaun White and Governor Arnold Schwarzenegger.
Myth: You can’t safely breastfeed a baby with CHD.
“You cannot breastfeed if the baby has CHD.”
“Babies with CHD can’t breastfeed because they use too much energy and won’t gain weight.”
BUSTED! One of the most common questions families have when they receive a CHD diagnosis is “Can I breastfeed my baby after birth?” While each child is different, as are the individual care centers, it is possible to safely breastfeed a baby with CHD – whether through direct breastfeeding, bottle feeding expressed breast milk, or expressed milk through a feeding tube. Most care teams should include feeding therapists, dietitians, and lactation consultants who can help navigate the process of providing breast milk for infants with CHD.
You can find more information about breastfeeding and CHD here: https://www.conqueringchd.org/breastfeeding/
Myth: Babies with CHD will require a g-tube or other feeding tube.
“You MUST go home with a g-tube post surgery. Even if you’re breastfeeding; apparently those calories don’t count because they’re harder to track.”
BUSTED! Infants and children with CHD are more prone to undernutrition than their peers without CHD – approximately two-thirds of patients with CHD experience stunted growth, with infants being at highest risk. This makes CHD patients more likely to require a feeding tube (e.g. an NG tube, G-tube, etc), but not all patients with CHD will require a feeding tube to assist with meeting their nutritional needs. Most care teams should include feeding therapists, speech therapists, and dietitians who can help ensure proper and adequate nutrition for the individual patient.
For more information on feeding and nutrition in CHD, click here: https://www.conqueringchd.org/feeding-and-nutrition-in-chd/
Myth: All CHDs are diagnosed before the baby is born, usually during the routine anatomy scan.
“My little boy wasn’t diagnosed until the age of 5. Thankfully it was picked up.”
“My baby girl was diagnosed at 8 weeks old after her pediatrician noticed a heart murmur at a routine checkup.”
“My son wasn’t diagnosed until he was 4 years old. He went in for a well check, the new pediatrician thought he heard an abnormal valve and his BP was through the roof.”
“Oxygen was a little low after birth, so a chest X-ray was taken and passed. Discharged undiagnosed, till the pediatrician detected a heart murmur at the one week checkup. A few days later the cardiologist diagnosed the ASD after a heart ultrasound.”
BUSTED! While many CHDs are diagnosed prenatally, not all of them are caught. In fact, each year, 200-300 newborns are discharged from the hospital with an undiagnosed CHD. In a recent email poll, 41% of our subscribers reported their CHD was diagnosed prenatally, while over 54% reported their CHD diagnosis was detected later, during infancy. Thanks to interventions like anatomy scan ultrasounds during pregnancy, and pulse oximetry screening for critical congenital heart defects at birth, more and more CHD diagnoses are being made earlier, resulting in fewer CHDs going undetected.
**Please note: This blog is intended to address myths and generalities about CHD and provide relevant resources for families to learn more. As always, with the information learned, we encourage patients and families to discuss their specific concerns directly with their care team.