Grandma Dorothy holding me at 5 months of age |
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 Luster, where Dad worked as a ranch hand. My regular pediatrician
was unavailable. A young doctor, fresh out of medical school, examined me
instead. Dr. Mattley quickly agreed the bluish tint to my lips was
disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting
enough oxygen, which is why her lips and fingernails are cyanotic,” he said.
He also detected a heart murmur. An
X-ray confirmed a possible heart defect. Following the examination, Dr. Mattley
called the 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. We’ll just have to wait and see. She most likely will
need to have heart surgery someday.”
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. Katrapu had ordered another round
of X-rays, an electrocardiogram, and blood work. “It is possible she has a hole
in her heart,” he told them. “This is common for babies. A simple surgery
should take care of it.” He went on to explain that a diagnostic test called a
heart catheterization would show any anomalies in my heart. “Unfortunately, we
can’t do the test here in Bismarck. The closest place is the University of
Minnesota Hospital in St. Paul.”
At six months old, I weighed only
twelve pounds. My lips and fingernails were getting more cyanotic by the day. 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–Saint Paul. They set out
from home on Grandpa Lawlar’s farm twenty miles north of Watford City to a
place completely foreign to them. Dad drove down the highway and then on
the Interstate with Mom sitting on the passenger side and me lying on a blanket
between them, which was completely legal at the time. Not having me restrained
in a car seat made it much easier to feed and change me during the twelve-hour
drive. The biggest city they had ever visited 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 looks on my parents’ faces, the
doctors assured them the routine heart catheterization would take only a couple
of hours. They explained they needed to locate the hole so they could operate
the next day. I had been gone for over three hours when Mom and Dad, stuck in
the waiting room, started to get anxious. Finally, five hours after my parents
had last seen me, Dr. Bessinger gave them the grim news.
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 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 were forced 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 ever
changed someone would get in touch with them. Four weeks later, the one phone
call they had been waiting for finally came.
Dad had just walked inside from
milking cows. “They called and said we could come and get Cari,” Mom told him.
They dropped my brother off at
Grandma and Grandpa’s, just down the road, 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 like a normal, healthy baby. My pinkish skin plus
the weight I had gained nearly shocked Mom. “It’s hard to believe this is the
same baby,” she quietly remarked to 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
bringing me home.
Four years after my first 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 that my Fontan 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! |
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.
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. They hoped by doing so, it would increase 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 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!
Despite how well I'm doing, it's hard to know what the future will bring. There are not that many people with double outlet right ventricle 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 in God's hands!
By the way, to celebrate Congenital Heart Defect Awareness Week, I am raising funds for the Adult Congenital Heart Association. I am doing so to raise awareness for the fact that many
adults born with congenital heart defects think their surgeries have
"cured" them. This is not true, however, as most people 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 congenital 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!
thanks for sharing your story with us really appreciated
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