By Seraine Page
A Congenital Heart Defect (CHD) is one of the most common birth defects among infants.
Pediatric Congenital Heart Defects are common enough that every 15 minutes a baby is born with one in the United States, according to the Centers for Disease Control and Prevention website. A birth defect is a congenital disorder (meaning it happens during the baby’s development in the womb); other names include congenital abnormalities or congenital malformations.
Whether you’ve recently learned your baby in utero has CHD or have recently given birth and a CHD was detected, this blog is for you. We hope to empower you with the knowledge to feel confident in discussing your child’s condition with his or her health team.
What is a Pediatric Congenital Heart Defect?
A Congenital Heart Defect — also known as CHD for short — is one or more issues with the heart’s structure. Present at birth, it impacts the way a baby’s heart pumps. With this defect, the heart improperly develops during growth in the womb. As with most health issues, CHD does vary in severity. Ultimately, anyone with this condition has a heart that prevents normal blood flow through the heart and body.
An inspiring note from Cleveland Clinic on CHD:
“Just because a healthcare provider may use the term “congenital heart defect,” it doesn’t mean your child is defective. They can still live a fulfilling life with congenital heart disease. Treatments have come a long way and can help many children who have heart issues at birth. If your baby has a heart issue, it’s important to see a cardiologist who specializes in CHD. Learn all you can about your child’s issue so you know the best ways to help them.”
Related: Harper Mae’s story
CHD Surgery Follow-up Care
If your child had open-heart surgery immediately after birth, it’s likely your little one will stay in intensive care to ensure stabilization. This may include a care team offering 24/7 support for pain management and other physical challenges like vomiting or weakness.
If your child had heart surgery following birth, you’ll want to keep a close eye on them as their body heals. Post-surgery, you will receive detailed instructions for at-home care for your child’s needs. Instructions regarding wound care will be given to you.
As with all surgeries, some complications could arise, so keep an eye on them.
Symptoms to be on the lookout for:
- Fever
- Worsening pain
- Puffy eyes or face
- Bluish or grayish skin
- Feeding or eating problems
- Shortness of breath or breathing difficulties
- Redness, swelling, or incision oozing/bleeding
Follow-up generally happens 1 to 2 weeks after leaving the hospital (or as instructed by your healthcare team). Most CHD children must see their cardiac team regularly for several years for frequent check-ups. Eventually, those appointments may be reduced to one annual exam as your child’s heart shows progress and strength.
Note: It’s extremely important to keep all follow-up appointments with your healthcare team.
Related: Da’Laya’s Story
How is Congenital Heart Disease Found?
During a pregnancy check-up via ultrasound, your physician may discover a heart anomaly that may require additional follow-up testing.
Once a baby is born, pulse oximetry can help doctors diagnose CHD if something is amiss with the newborn’s health. These are sensors placed on the baby’s toes or fingers to gauge oxygen levels. Additionally, physical exams, chest X-rays, electrocardiogram (EKG or ECG), echocardiogram (echo), and an MRI are all diagnostic tools used to diagnose CHD after birth. Typically, CHD is very apparent after birth if it is not detected during pregnancy.
What are the Types of Defects?
There are many types of CHDs. Mayo Clinic has a lengthy list on its website to include:
- Atrial septal defect (ASD)
- Atrioventricular canal defect
- Bicuspid aortic valve
- Coarctation of the aorta
- Congenital mitral valve anomalies
- Double-outlet right ventricle
- Ebstein anomaly
- Eisenmenger syndrome
- Hypoplastic left heart syndrome
- Kawasaki disease
- Long QT syndrome
- Partial anomalous pulmonary venous return
- Patent ductus arteriosus (PDA)
- Patent foramen ovale
- Pulmonary atresia
- Pulmonary atresia with intact ventricular septum
- Pulmonary atresia with ventricular septal defect
- Pulmonary valve stenosis
- Tetralogy of Fallot
- Total anomalous pulmonary venous return (TAPVR)
- Transposition of the great arteries
- Tricuspid atresia
- Truncus arteriosus
- Vascular rings
- Ventricular septal defect (VSD)
- Wolff-Parkinson-White (WPW) syndrome
Related: Fable’s Story
What’s the Outlook?
Prompt medical care makes all the difference in survival and health outcomes from birth and beyond. Thankfully, the advancement of modern medicine and CHD surgical management shows a decline in death rates, according to Circulation, a cardiovascular medical journal.
The leading cause of birth defect-associated illness and death is heart defects. According to the CDC, 4.2% of all neonatal deaths were due to heart defects. Neonatal is a term used when babies are 28 days old or younger.
Survival depends on a variety of factors including:
- Treatments
- Diagnosis timing
- Severity of the defect
- Other health conditions
Luckily, medical advancements have improved and increased the risk of a one-year survival rate for critical CHD infants — 83% is the expected survival rate now, according to the U.S. Centers for Disease Control and Prevention.
Additionally, 69% of babies with critical heart defects are expected to make it to their 18th birthday.
Related: Anabel’s Story
Complications of CHD
Even with medical advancements, there are still considerations that put these children at risk. CHD patients are at a higher risk for developing further problems, including health and developmental issues.
Here’s a look at some of the potential complications:
Developmental Concerns
Those with serious CHD often experience developmental delays including a late start to talking or walking. Physical coordination may also be an issue.
Learning difficulties may include:
- Issues with memory
- Low attention spans
- Poor impulse control
- Concentration problems
- Language problems (expressing themselves or understanding others)
Keeping in regular contact with your child’s pediatrician about milestones helps ensure your child receives interventions — like specialized therapies — sooner rather than later.
Need for Extra Care
Those with serious heart conditions are likely to have special healthcare needs early on. It’s estimated that 60% of pediatric heart patients have special healthcare requirements compared to 20% of kids without one. Therapies and interventions will vary but may include physical or speech therapy, medicines, and additional treatment for behavioral or developmental issues.
Compromised Immune Systems
Pediatric congenital heart defect patients often exhibit a compromised immune system, as the heart condition interferes with the normal circulation of blood, which is essential for the distribution of immune cells throughout the body. Additionally, invasive surgeries can leave CHD patients immunocompromised during a longer recovery, and susceptible to serious infection development like pneumonia.
Related: Woodson’s Story
Treatment Centers for CHD
CHD treatments will vary depending on the individual. Those with serious symptoms may need surgery or other medical therapies often throughout their first year of life.
As a caregiver of a CHD child, you’ll likely work with two specialists a lot: pediatric cardiologists and pediatric heart surgeons. Treatment options may vary and sometimes require out-of-state travel.
Here are medical centers and hospitals that provide cardiac care for children:
- St. Louis Children’s and Washington University Heart Center – Serves as the region’s largest pediatric heart center and offers medical interventions ranging from cardiac surgeries to heart monitoring
- Lurie Children’s Heart Center (Chicago) – Cardiologists here see more than 20,000 pediatric outpatients for diagnostic visits annually
- Oklahoma Children’s Hospital OU Health Heart Center – The survival rate for children who receive open-heart surgery at this hospital is 98.8%
- Ward Family Heart Center at Children’s Mercy (Kansas City) – A team of 35 pediatric cardiologists offers comprehensive heart care for children
- Riley Children’s Health (Indiana) – With 12 inpatient facilities across Indiana, this nationally-ranked hospital provides cardiology services, including heart surgery
- Children’s Minnesota Cardiovascular Program – As the largest pediatric cardiology program in the state, patients can receive comprehensive heart care
- Boston Children’s Hospital – Boasts more than 26 decades of collective experience caring for CHD patients
- Children’s Hospital of Philadelphia – Home to more than 900 experts specially trained for pediatric heart care
- Children’s National Hospital (Washington, D.C.) – Ranked as one of the top pediatric hospitals by U.S. News
- Texas Children’s Hospital – Annually performs more than 1,000 cardiac procedures
Additional CHD Resources & Support
As a parent or guardian of a child with CHD, the best way to advocate for your child’s health is to learn as much as you can about Congenital Heart Defects. Below are a variety of reputable resources to further help educate on the topic of CHD.
- The Children’s Heart Foundation
- Mayo Clinic CHD in Children
- On Angels’ Wings Recipient Stories
- Mayo Clinic Transplant Support Group
Are you looking to connect with other families who get it? The St. Louis Congenital Heart Walk raises awareness about The Children’s Heart Foundation and CHDs each year. Proceeds benefit the foundation and help advance diagnosis, treatment, and prevention measures. Keep an eye out for the date of the walk!
We hope the above information and resources help you or someone you know who loves a child with CHD. If you need FREE therapeutic photography services for your CHD child, please reach out to request a professional photo session.
Read more stories from OAW recipients about their heart warriors:
