Congenital Heart Disease in Grand Rapids, Michigan

Approximately one in every 100 babies is born with a heart defect. This is called a congenital heart defect (CHD). Some heart defects are mild and may not significantly affect how the heart functions, while others are serious and require early treatment.

In Grand Rapids and across West Michigan, babies and children with congenital heart disease are commonly cared for through major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health, often in collaboration with pediatric cardiology specialists.

How the Heart Normally Works

The heart is a powerful double pump made up of four chambers:

  • Right atrium (right upper collecting chamber)
  • Right ventricle (right lower pumping chamber)
  • Left atrium (left upper collecting chamber)
  • Left ventricle (left lower pumping chamber)

Blood flows through the heart and lungs in this order:

  1. Low-oxygen blood from the body enters the right atrium.
  2. It moves into the right ventricle, which pumps it to the lungs through the pulmonary artery.
  3. In the lungs, blood picks up oxygen.
  4. Oxygen-rich blood returns to the left atrium.
  5. It then flows into the left ventricle, which pumps it into the aorta (the main artery) and out to the rest of the body.

When the heart or major blood vessels do not form correctly during fetal development, this normal flow can be disrupted.

What Is Congenital Heart Disease?

Congenital heart disease refers to heart defects that are present at birth. These can involve:

  • Abnormal blood flow through the heart
    • For example, blood passing through a “hole” in the wall between chambers.
  • Underdeveloped parts of the heart
    • Such as small or poorly formed ventricles, valves, or blood vessels.
  • Blockages or narrowing
    • That prevent blood from flowing normally through the heart or major arteries.

More than half of children with CHD have a condition serious enough to require medical or surgical treatment, often in the first months or years of life.

In Michigan, including the Grand Rapids area, ventricular septal defect (VSD) is one of the most common congenital heart defects.

Acquired Heart Disease in Children

Not all heart problems in children are present at birth. Some develop later and are called acquired heart diseases. These can be caused by infections or inflammation, including:

  • Kawasaki disease – a condition causing fever and swollen lymph glands that can affect the coronary arteries.
  • Myocarditis – inflammation of the heart muscle.
  • Cardiomyopathy – disease of the heart muscle affecting its ability to pump.
  • Rheumatic heart disease – damage to heart valves following certain streptococcal (strep) infections.

Children in Grand Rapids with these conditions are typically managed by pediatric cardiologists at local hospital systems, with support from the Kent County Health Department and Grand Rapids Public Health for vaccination and infection prevention.

Causes of Congenital Heart Disease

In about 8 out of 10 cases, the exact cause of a congenital heart defect is unknown. However, several factors are known to increase risk:

Genetic Factors

  • Around 20% of CHD cases have a genetic cause.
  • Children with certain genetic syndromes (such as Down syndrome or Noonan syndrome) are more likely to have heart malformations.
  • A family history of congenital heart defects can increase risk.

Other Birth Defects

  • Babies with other major birth defects or chromosomal abnormalities may have a higher chance of CHD.

Maternal Health and Illness

  • Infections during pregnancy, such as rubella (now rare due to vaccination), can increase risk.
  • Unmanaged diabetes, poor nutrition, and certain chronic illnesses in the mother can affect fetal heart development.
  • Advanced maternal age can be associated with a higher risk of chromosomal abnormalities and heart defects.

Medications, Alcohol, and Drugs

  • Certain prescription or over-the-counter medications taken during pregnancy may increase the risk of CHD.
  • Illicit drugs and heavy alcohol use during pregnancy are linked to a higher risk of congenital heart disorders.
  • All medications in pregnancy should be reviewed with an obstetrician or maternal–fetal medicine specialist.

In Grand Rapids, pregnant women can discuss medication safety and vaccination with their OB/GYN, family doctor, or clinics associated with Corewell Health, Trinity Health Grand Rapids, or Metro Health.

Symptoms of Congenital Heart Disease in Babies and Children

Symptoms can appear at birth, in the first weeks of life, or later in childhood. Common signs include:

  • Shortness of breath or fast breathing
    • May be due to fluid buildup in the lungs or poor heart function.
  • Difficulty feeding
    • Babies may tire easily, sweat during feeds, or not finish bottles.
  • Poor weight gain or failure to thrive
    • Not growing at the expected rate.
  • Bluish color of the lips, tongue, or skin (cyanosis)
    • Caused by mixing of oxygen-poor (blue) and oxygen-rich (red) blood.
  • Fast heart rate or pounding heart
  • Excessive sweating, especially during feeds or mild activity
  • Lethargy or low energy

In West Michigan’s cold winters, bluish lips can sometimes be mistaken for cold exposure. Persistent or unexplained blue coloring, breathing difficulty, or poor feeding should be evaluated immediately in an emergency department, such as those at Helen DeVos Children’s Hospital (Corewell Health) or other local hospitals.

Five Common Congenital Heart Defects

1. Ventricular Septal Defect (VSD)

A ventricular septal defect is a hole in the wall (septum) between the two lower pumping chambers of the heart (the ventricles). It is one of the most common congenital heart defects in Michigan.

How VSD Affects the Heart

  • The hole allows oxygen-rich blood from the left ventricle to mix with oxygen-poor blood in the right ventricle.
  • This can cause the heart to work harder and may lead to:
    • Enlargement of the heart
    • Increased blood flow to the lungs
    • Symptoms of congestive heart failure in more severe cases

Symptoms of VSD

  • Breathlessness or rapid breathing
  • Difficulty feeding
  • Poor weight gain
  • Fast heart rate
  • Frequent respiratory infections or pneumonia

Treatment of Ventricular Septal Defect

Treatment depends on the size and location of the defect and the child’s symptoms:

  • Small VSDs
    • May close on their own over time.
    • Often require only careful monitoring by a pediatric cardiologist.
  • Moderate to large VSDs with symptoms
    • May require medications to manage heart failure symptoms.
    • Often need open-heart surgery in infancy or early childhood to close the hole, usually with a surgical patch.
  • Catheter-based procedures
    • In some older children with suitable anatomy, the VSD can be closed using a catheter procedure with an implantable device, avoiding open-heart surgery.

In Grand Rapids, these procedures are typically performed at regional pediatric cardiac centers, often through Corewell Health or partner institutions, with follow-up care available locally.

2. Transposition of the Great Vessels (TGA)

Normally:

  • The pulmonary artery carries blood from the right ventricle to the lungs.
  • The aorta carries blood from the left ventricle to the body.

In transposition of the great vessels (TGA), these major arteries are switched:

  • The pulmonary artery is attached to the left ventricle.
  • The aorta is attached to the right ventricle.

Why TGA Is Dangerous

  • Oxygen-rich blood from the lungs is pumped back to the lungs instead of to the body.
  • Oxygen-poor blood is pumped to the body instead of to the lungs.
  • Without some way for blood to mix (such as a hole between the heart chambers), this defect can be fatal in the first days or weeks of life.

Symptoms of TGA

  • Cyanosis – blue coloring of the lips, tongue, and skin
  • Fast breathing and difficulty breathing
  • Poor feeding
  • Lethargy

Treatment of Transposition of the Great Vessels

Treatment is urgent and staged:

  1. Balloon septostomy
    • A catheter procedure to enlarge the natural opening between the upper chambers (atria).
    • Allows more mixing of oxygenated and deoxygenated blood, helping more oxygen reach the body.
  2. Corrective surgery
    • Usually performed in the first two weeks of life.
    • The arteries are reconnected in their normal positions so blood flows correctly to the lungs and body.

Babies born in Grand Rapids with suspected TGA are typically stabilized in local NICUs and then managed by specialized pediatric heart surgery teams, often in coordination with major children’s hospitals in Michigan.

3. Coarctation of the Aorta

The aorta is the main artery that carries blood from the heart to the rest of the body. Coarctation means a narrowing or pinching of a section of the aorta, usually in the upper chest.

How Coarctation Affects the Body

  • Blood pressure above the narrowing (arms, head) is often higher than normal.
  • Blood pressure below the narrowing (legs, lower body) is lower than normal.
  • The heart must work harder to push blood through the narrowed segment.

Symptoms

Symptoms often appear in the first week of life if the narrowing is severe:

  • Breathlessness or difficulty breathing
  • Poor feeding
  • Pale or cool skin
  • Weak pulses in the legs
  • Collapse or shock in severe cases

In milder cases, coarctation may not be diagnosed until childhood or adulthood, sometimes during evaluation for high blood pressure.

Treatment of Coarctation of the Aorta

  • Severe coarctation in infancy
    • Usually requires surgery to remove or widen the narrowed section.
  • Older children and adolescents
    • The narrowing can sometimes be treated with balloon angioplasty (stretching the narrowed area with a balloon) or placement of a stent to hold the artery open.

Follow-up care is important because high blood pressure can remain an issue even after repair. Pediatric and adult cardiologists in Grand Rapids work together to provide lifelong follow-up for patients with repaired coarctation.

4. Tetralogy of Fallot (TOF)

Tetralogy of Fallot involves four main heart defects:

  1. Ventricular septal defect (VSD) – a hole between the lower chambers.
  2. Pulmonary stenosis – blockage or narrowing of blood flow out of the right ventricle to the lungs.
  3. Overriding aorta – the aorta is shifted toward the right ventricle and sits over the VSD.
  4. Right ventricular hypertrophy – thickening of the wall of the right ventricle due to extra work.

These defects allow oxygen-poor and oxygen-rich blood to mix, reducing the amount of oxygen reaching the body.

Symptoms of Tetralogy of Fallot

  • Cyanosis – blue coloring of the lips and skin, often appearing in the first weeks or months of life.
  • “Tet spells” – sudden episodes of deep blue color, fast breathing, or irritability, often with crying or feeding.
  • Poor weight gain and fatigue.

Treatment of Tetralogy of Fallot

Treatment requires surgery:

  • Complete repair
    • Closing the VSD with a patch.
    • Removing or relieving the blockage from the right ventricle to the lungs.
  • Shunt operation (preliminary surgery)
    • In some infants with severe symptoms, a temporary shunt is placed to increase blood flow to the lungs and relieve cyanosis.
    • This does not correct the underlying defects but stabilizes the baby until full repair is possible.

Children with TOF typically need long-term follow-up with a pediatric cardiologist and, later, an adult congenital heart disease specialist.

5. Hypoplastic Left Heart Syndrome (HLHS)

In hypoplastic left heart syndrome, the entire left side of the heart (including the left ventricle, mitral valve, aortic valve, and parts of the aorta) is severely underdeveloped.

Why HLHS Is Critical

  • The left side of the heart is normally responsible for pumping oxygen-rich blood to the body.
  • In HLHS, it cannot support circulation.
  • Without treatment, most babies will die within days or weeks of birth.

Symptoms of HLHS

  • Grey or pale skin color
  • Severe breathing difficulties
  • Poor feeding
  • Weak pulses
  • Signs of shock as the natural fetal shunts close after birth

Treatment of Hypoplastic Left Heart Syndrome

HLHS requires complex, staged surgeries:

  1. Norwood operation (in the first days of life)
    • Restructures the heart and major vessels so the right ventricle becomes the main pumping chamber supplying blood to both the body and lungs.
  2. Second and third operations (in early childhood)
    • Further surgeries (such as the Glenn and Fontan procedures) are performed to improve blood flow and reduce strain on the heart.

These surgeries are high-risk and technically difficult. Families in Grand Rapids may receive initial diagnosis and stabilization locally and then be referred to specialized pediatric cardiac surgery centers in Michigan. Ongoing follow-up is typically coordinated between these centers and local pediatric cardiology practices.

Preventing Infections in Children with Heart Defects

Children with certain congenital heart defects or heart repairs may be at increased risk of infective endocarditis, a serious infection of the heart’s inner lining or valves.

Procedures That Can Increase Risk

Bacteria can enter the bloodstream during:

  • Dental procedures (such as tooth extractions or gum surgery)
  • Surgeries or procedures involving the:
    • Mouth or nose
    • Intestinal tract
    • Genitourinary system (bladder, kidneys, reproductive organs)

Antibiotic Prophylaxis

  • Some children with heart defects may need antibiotics before certain procedures to reduce the risk of infective endocarditis.
  • Whether your child needs this depends on their specific heart condition and type of surgery or procedure.

Always discuss this with your child’s cardiologist, pediatrician, or dentist in Grand Rapids before any invasive procedure.

Medications, Immunizations, and Ongoing Care

  • Medications
    • All medications (prescription, over-the-counter, herbal, or supplements) should be checked with a pharmacist, family doctor, or cardiologist, especially in children with heart disease.
  • Immunizations
    • Most children with congenital heart disease should receive their routine vaccinations on schedule.
    • Additional vaccines (such as flu and RSV prevention in high-risk infants) may be recommended, especially given Michigan’s long, cold winters and higher rates of respiratory infections.
  • Lifestyle and Follow-Up
    • Regular follow-up with a pediatric cardiologist is essential.
    • As children grow into adults, they should transition to an adult congenital heart disease specialist.

Local support in Grand Rapids is available through hospital-based programs, primary care clinics, and public health resources like the Kent County Health Department and Grand Rapids Public Health.

Where to Get Help in Grand Rapids, MI

If you are concerned your baby or child may have a heart problem, or you need follow-up for a known congenital heart defect, you can start with:

  • Your GP or family doctor
  • Pediatrician
  • Pediatric cardiology clinics at:
    • Corewell Health (Helen DeVos Children’s Hospital)
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health and affiliated clinics
  • Local public health resources:
    • Kent County Health Department
    • Grand Rapids Public Health clinics

For urgent symptoms such as severe breathing difficulty, blue or grey skin color, collapse, or unresponsiveness, call 911 or go to the nearest emergency department immediately.

Key Points About Congenital Heart Disease

  • About 1 in 100 babies is born with a congenital heart defect.
  • Some defects are mild and may not significantly affect heart function.
  • More than half of children with CHD have a condition serious enough to require medical or surgical treatment.
  • Known risk factors include:
    • Genetic causes (around 20% of cases)
    • Other birth defects or genetic syndromes (such as Down syndrome)
    • Maternal illness, medications, alcohol, or drug use during pregnancy
  • Common symptoms include:
    • Shortness of breath
    • Difficulty feeding
    • Poor growth
    • Blue lips or skin (cyanosis)
  • Five important congenital heart defects seen in Michigan and the Grand Rapids area are:
    • Ventricular septal defect
    • Transposition of the great vessels
    • Coarctation of the aorta
    • Tetralogy of Fallot
    • Hypoplastic left heart syndrome
  • Children with heart defects often need special care to prevent infections, careful medication management, and lifelong follow-up with heart specialists.

Early diagnosis and expert care—readily available through Grand Rapids’ major health systems—can significantly improve outcomes and quality of life for children and adults living with congenital heart disease.