CHD Awareness Week: My Heart Story (So Far)

In February 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup.

Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Lustre, where Dad worked as a ranch hand. My regular pediatrician was unavailable. Instead, a young doctor, fresh out of medical school examined me. 

Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it, dubbed me a "blue baby." He told Mom that my body wasn't getting enough oxygen, which is why I was cyanotic. 

He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the exam, Dr. Mattley called a clinic in Great Falls, which employed the closest pediatric cardiologist in Montana, 300 miles away. 

At the age of three months, I had my first electrocardiogram. I also had a second set of X-rays. The cardiologist admitted to my parents that he wasn't sure what he was seeing. "There's nothing we can do at this time," he told them. "She most likely will need to have heart surgery someday." 

There was no Internet or access to medical information to do their own research. My parents had no other alternative than to believe I would survive long enough to have surgery. 

When I was four months old, my parents moved back to their hometown in North Dakota. Mom heard about a pediatric cardiologist in Bismarck and my parents took me there in June. 

Dr. Kotrapu had just begun working at MidDakota Clinic. After examining me, he ordered another round of X-rays, an electrocardiogram, and blood work. He told my parents it was possible I had a hole in my heart, which was common for babies. He said surgery should take care of it. 

He went on to explain that a diagnostic test called a heart catheterization would show any other anomalies in my heart. This test could not be performed in Bismarck, however, so we had to go to the University of Minnesota Hospital in St. Paul. 

Me with Grandma Dorothy when I was five months old. 

At six months old, I weighed only 12 pounds. I was still cyanotic, and I slept most of the time. Drinking from my bottle completely wore me out. My appointment in Minnesota could not come fast enough. 

In August, Mom and Dad loaded up their Ford Galaxy (with no air conditioning) to make the 600-mile trip to Minneapolis-St. Paul. They set out from home on Grandpa's farm twenty miles north of Watford City to a place completely foreign to them. Dad drove with Mom sitting on the passenger side and my lying on a blanket between them, which was completely legal at the time! It was also very convenient as it made feeding and changing me much easier during the 12-hour drive. 

Up to that point, the biggest city my parents had ever been in was Fargo, where Dad had gone to college. They were completely overwhelmed by the size of the Twin Cities but somehow managed to find the hospital. 

My parents met with four different doctors, including Dr. Bessinger, the pediatric cardiologist. Following the usual tests, a nurse carefully placed me on a large gurney, making me look much smaller than I was. In response to the panicked look on my parents' faces, the doctors assured them the routine heart catheterization would take only a couple of hours. They needed to see exactly what was going on with my heart so they could operate the next day. Over five hours later, Dr. Bessinger gave them the grim news. 

He told them I did have a hole in my heart, but I also had much more going on than originally suspected. An exact diagnosis could not be determined. The doctor explained to my parents how a normal heart has four chambers but only three of mine were fully functioning. He also said I had some blockage to one of the main arteries attached to my right ventricle. I would need to have a shunt placed between my pulmonary artery and aorta, allowing more oxygen to flow through my body. Without the shunt, I might eventually suffocate to death. 

Dr. Bessinger warned my parents the shunt would not be a permanent fix. As I grew older, I would have to get another one placed. My parents were informed that my particular heart defect was rare, and the prognosis was uncertain. Even with the shunts, I might not live to see my twenties. 

Following my surgery the next day, the doctor asked a nurse to take my parents to the Intensive Care Unit to see me. The surgeons had opened me up on the left side of my body. Along with several IVs, I had a tube down my throat and a big machine near my bed pumping oxygen into my body. As the machine pumped, they could see my little chest move up and down. 

Though tubes, lines, and bandages obscured much of my body, Mom did notice my lips were not quite as blue. Dad, completely unprepared for what I would look like, nearly passed out when he saw me. Fortunately, a nurse standing close by steadied his wavering body. As they stood over me, nurses came in to draw blood from my heel every ten minutes. 

A couple of days later, the doctors discharged me from the ICU and moved me to the pediatric floor. Mom and Dad did not have enough money to stay in the Twin Cities during my entire hospital stay. They made the agonizing decision to leave me in the hospital and make the long drive back home. The only thing connecting them to me was the daily long-distance phone calls to the nurses. The nurses always reassured my parents if anything changed, someone would get in touch with them. 

Four weeks later, the phone call they had been waiting for finally came. Dad had just walked inside the house from milking cows. "They called and said we could come and get Cari," Mom told him. 

They quickly packed some things, dropped my brother off at Grandma and Grandpa's, and drove all night to be reunited with their baby. When they reached the hospital twelve hours later, they were relieved to see that I looked much healthier. "It's hard to believe this is the same baby," Mom had told Dad. 

They stood there for several minutes watching me kick my legs around in the crib, marveling at the amount of energy I had. Within hours, I was discharged, and Mom and Dad were back on the road brining me home. 

Four years after my surgery, I had another one, and then at 10 my Fontan. In between surgeries, I had been officially diagnosed with Double Outlet Right Ventricle (DORV). Unfortunately, at that time, the doctors believed my Fontan had cured my heart defect. There just wasn't enough research to tell them otherwise. 

When I was 19 years old, I was hospitalized with congestive heart failure. I never fully recovered, which is why in 1999 at the age of 25, I needed to undergo my fourth open heart surgery. Three months later, I had a pacemaker implanted. 

I am beyond grateful for the wonderful medical care I have received through the years, and that despite what doctors said, I was able to have a child. My daughter, Faith is the most wonderful gift the Lord could have ever given me. 

Celebrating my 45th birthday with my daughter! 

About 5 months after I had my daughter, I needed to go back to the Mayo Clinic to get my pacemaker battery replaced. Because my heart relied so heavily on my pacemaker, the battery didn't last as long as they normally do. This meant I had to get my battery changed about every 4 to 5 years. 

Eventually, as my original lead began to fail, I needed to get the battery replaced every 2 to 3 years. Finally, in 2021, my cardiology team thought it might be time to put a new lead in. In doing so, they hoped it would lengthen my battery life. 

I just had that procedure last June. I was so blessed my sister, Tesa could drive me to Rochester and look after me. I had the support of many family members and friends, some of whom took turns looking after Faith while I was away. Even though I had some restrictions following the procedure, it was nothing like getting the original pacemaker! 

So blessed my sister, Tesa could take me to Rochester! 

Despite how well I'm doing, it's hard to know what the future holds. There are not that many people with DORV in their late 40's! I only know that I will continue to look after myself the best I can and keep up with all my cardiology appointments. The rest is entirely in God's hands! 

By the way, to celebrate Congenital Heart Defect Awareness Week, I am raising funds for the Adult Congenital Heart Association (ACHA). I am doing so to raise awareness for the fact that many adults born with congenital heart defects will need medical care for the rest of their life. 

Other adults with congenital heart defects fall through the cracks between pediatric and adult care. The ACHA helps adults find specialized cardiologists that treat adults born with heart defects. In so doing, this organization improves the quality of life and helps extend the lives of adults with CHD. Please feel free to make a donation!