Life With a Congenital Heart Defect (CHD)

February 7-14, 2023 is Congenital Heart Defect Awareness week and I am sharing my congenital heart defect story and how having a CHD impacts my life. A Congenital Heart Defect (CHD) can be detected at any time in ones life and is a condition which affects the overall structure of the heart. My ASD, VSD, leaky mitral valve and holes in my heart make it special! My hope is to share my story in order to spread CHD awareness.

How Heart Defects are diagnosed

To start our CHD awareness story, I was diagnosed with my congenital heart defect during infancy. My parents did not know anything was ‘wrong’ with me before birth or for a while afterwards. I was not born blue, did not have difficulty breathing at birth and was overall a healthy, little peanut!

At on one of my routine infant doctor appointments, my parents were told my heart sounded ‘funny’. It sounded like I had a ‘whoosh’ every couple of beats and they were directed to a heart specialist. After this appointment my parents were given the news I had an Atrial Septum Defect (ASD), Ventricular Septum Defect (VSD) and a leaky mitral valve. I would need to have corrective open heart surgery as soon as possible. The first goal was to get me to weigh enough for the operation.

My heart was putting in additional effort each day to keep me moving and growing which made gaining weight no easy feat! My parents did everything to help me pack on the pounds which meant starting solids at four months old. They would add coconut oil to rice cereal which thickened a bottle of formula, provide me purees and something I recently found out – a lot of mashed potatoes. After multiple months, I had gained a little over three pounds, putting me at a high enough weight to have the surgery at nine months old.

My Baby Open Heart Surgery Experience

My family lived in California at the time of the first open heart surgery. My heart surgeon, Dr. Lamberti, classified the surgery successful because they were able to address many issues. They patched holes in my heart, attempted to repair the leaky mitral valve and were able to assess the actual amount of leakiness between my heart’s septum.

This surgery left me with a unique scar, shaped like an underwire bra across my chest. Additionally I have small tube hole scars where fluid drained from my chest. Recovery for this surgery was no easy feat as I was an infant who wanted to be on the move. To this date I am still amazed at how well the scar healed.

CHD Annual Tests

Since my diagnosis I have been followed by multiple pediatric heart doctors. This includes annual appointments to gauge the status of my heart and often includes additional assessments. Throughout my life I had the following tests:

• Annual: Echocardiogram (An ultrasound of the heart), EKG, height/weight
• Bi-Annual: Stress Test (A physical fitness test to gauge the heart’s strengths and weaknesses during induced exercise).
• Bi-Annual: Chest X-Ray
• Additional Assessments (as needed): Blood Labs (To check for white and red blood cell count as well as iron levels) and Holter Monitor (To check for variabilities in heart beat)

Most appointments lasted around two to three hours as the pediatric cardiologist would review the tests for any changes (for better or worse) each year. We would also cover any additional symptoms I may be feeling which could be linked with changes in the heart (fatigue, changes in weight, heart skipping a beat, headaches, overall swelling).

Exercising with a CHD

Growing up I was always a physically active kid. I wanted to play all the sports and do all the things everyone else did. I can count a number of times where other parents would comment on how flush and red my cheeks became when I worked out. They continually asking my parents if it was “ok” which is why CHD awareness is important.

My doctors always encouraged me to be a healthy weight and to stay physically active. They encouraged 150 minutes of moderate intensity exercise in the form of cardiovascular training per week. Through time the form of activity I enjoy has changed from running to walking, biking to lifting weights swimming to soccer, competitive dance to lacrosse and even gymnastics and volleyball. I am blessed to say my heart defect does not negatively impact my ability to stay physically active.

CHD Ablation Surgery

When I was in middle school, had heart palpitations (called an arrhythmia) which would occasionally cause me to feel dizzy. One time I had an arrhythmia while walking down the stairs and took a slight tumble. This was not normal for me and caused us to head to the pediatric heart doctor. I had to take another stress test to see how my heart rate varied during physical activity.

Upon taking a stress test, the doctors noticed my heart rate would jump close to 200 beats per minute without me feeling exhausted. While hooked up to the EKG leads and oxygen mask while running on the treadmill, I said to the technician my heart rate ‘jumped’. The look on her face was complete shock as she lost all her color in disbelief when my heart rate suddenly skyrocketed. I immediately stopped the test and the doctors monitored my heart rate for 30 days with a Holter Monitor.

To see how often my heart had arrhythmias and to see if something specific caused it, I did any activity I thought would ‘trigger’ my heart rate to jump. Any time I felt something happen, I had to use a symptom tracker on an old school blackberry phone. This included tracking my symptoms: what it felt like, how long it lasted and what I was doing. When reviewing the data after 30 days, to our surprise, many of my arrhythmias occurred at night while I was asleep!

A few months later I had a corrective heart ablation through a vein located in my groin to freeze and burn the sites in my heart causing the arrhythmias. This was one of the last procedures I could complete before having another open heart surgery or, if the heart beat issues became worse or uncontrollable, using a pacemaker.

Dr. Edward L. Bove Heart Surgery

God’s timing is one of my favorite ‘surprises’. We met my future heart surgeon on spring break in Palm Coast, Florida. For years, I suffered from daily migraines and spent many days resting in bed. While in Florida I kept going back up to our room to unwind because the pain was unbearable under the sun.

A young woman who was staying at the same resort came up to my parents and said ‘your daughter suffers from migraines doesn’t she?’. After talking for a while, the topic of her father being a heart surgeon came up as he worked with other surgeons in the state of Michigan. When the young woman’s father saw me later that day in pain, he asked my parents if he could take a look at my medical records.

Apparently, this heart doctor, along with other surgeons and medical professionals at the University of Michigan were studying the connection between Congenital Heart Defects (CHD) and symptoms like migraine headaches. He had a theory by fixing the holes in my heart the blood could flow easier throughout my body and cause my headaches to lessen. Naturally as any parent would who wants to help their child feel better, my parents agreed to send over my paperwork and the surgeon thought I was the perfect candidate. My name made it top the top of the open heart surgery list by none only than the best pediatric heart surgeons, Dr. Edward L. Bove, M.D. To date, Dr. Bove and his team continue spreading their message on CHD awareness.

Open Heart Surgery and Removal of Sternum Wire

When I was in my late teens, I had my second open heart surgery. Dr. Bove and his team addressed my ASD, VSD and repaired two large holes in my heart. The two holes, originally thought to be the size of a coffee staring stick, were the size of a dime and quarter. The surgeons were able to patch these holes. The also confirmed the mitral valve repair from my childhood was leaky but holding strong. My new scar was a straight line down my chest. It starts a few inches below my collar bone to the middle of my rib cage.

Recovery for this heart surgery was lengthy. I relied on my parents for everything including walking up the stairs, helping me shower and moving out of bed. Each day my mom would walk with me as I re-gained strength. She pushed me to go a couple of steps further each day. I starting with making it halfway to the mailbox and later to the end of the driveway. Each day I completed breathing exercises in an incentive spirometer to ensure my lungs stayed clear of fluid. I also had to stretch my chest and back.

My mom and I started swimming as a gentle way to get me excising again and build up cardiovascular strength. When swimming or stretching my arms over my head, I felt something catching in my chest. This pain was caused by the sternum wires holding my breastbone together. A month later, I had the sternum wires removed. The surgeon had to use the same incision from my open heart surgery. This caused a keloid to build on top of my already existing scar.

Pregnancy with a Congenital Heart Defect

Having a CHD weighed on my husband and I’s mind when discussing expanding our family. We were reassured by our doctors expanding the family would not negatively impact my heart. The doctors monitored me for any potential complications during pregnancy. We knew the chances of increased leakiness within my valves due to the additional blood volume from pregnancy.

I had three cardiologist appointments during my pregnancy and postpartum. Each included an echocardiogram and check up with my cardiologist. I had in the first trimester, third trimester, fourth trimester. We would discuss how I was feeling and see results from the echocardiogram showing how my heart was handling pregnancy. During the third trimester appointment we discussed precautionary measures during labor and delivery.

The only extra precaution had was an IV filter to help prevent any air bubbles from traveling down the line. To my surprise, I did not need additional antibiotics during delivery. I need them during routine dental exams to prevent blood infections from any potential new germs introduced to my body.

My team was supportive of my birth preferences and did not push me to do anything specific – like get induced early [39 weeks], birth at a specific location or have medical support like an epidural. I felt confident my birth team had my back. All the doctors communicated frequently to discuss patients and expected deliveries. The cardiology team met with the OB’s monthly to discuss patients and answer any questions regarding labor and delivery.

An additional doctor appointment was meeting with Maternal Fetal Medicine. Though my CHD is not hereditary, we meet with MFM for a fetal heart scan on our daughter in utero. I had four ultrasounds throughout my pregnancy and none showed heart defects. A pediatric cardiologist reviewed the fetal ultrasound. The cardiologist was also present to listen to our daughters heart before we left the hospital after delivery. We do not have to go to MFM for future pregnancies as our daughter was ‘in the clear’!

I feel very blessed to have had a wonderful pregnancy, labor, delivery and postpartum experience. My hope is any future pregnancies are a similar outcome. I am proud of my body and the strength I have. Spreading CHD awareness to both prenatal and postpartum moms makes me feel very lucky.

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To learn more about CHD awareness, the American Heart Society has a wonderful page, linked here. Do you know anyone with a CHD or a child with CHD? If so, please share this blog with them to promote CHD awareness!