Pebbles and Bam Bam

Everyone has a friend that has been with them most of their lives. I am no exception. Friends can be made at any age and under any circumstance. My first friend was made by circumstance, a hospital and a shared disability.

In the 1980’s when two infants were in the PICU (pediatric intensive care unit), they were placed two to a crib. The babies were laid foot to foot with their heads at opposite ends of the crib and coupled by their shared disabilities. At 5 months old I shared a crib with a boy who also had a congenital heart defect, although he did not share my diagnoses. We were the same age and affectionately nicknamed Pebbles and Bam Bam by our nurses. Unlike me, Bam Bam suffered from an anomaly called TGA (transposition of the great arteries). This defect is classified by the following traits:

Transposition of the great arteries is a congenital heart defect in which the two major vessels that carry blood away from the heart — the aorta and the pulmonary artery — are switched. In transposition of the great vessels, the blood goes to the lungs, picks up oxygen, and then goes right back to the lungs without ever going to the body. Blood from the body returns to the heart and goes back to the body without ever picking up oxygen in the lungs.

TGA and TA, my defect, are both classified as cyanotic heart defects. Cyanotic heart defects are defined as defects that cause decreased oxygen in the blood that is pumped from the heart to the rest of the body. This causes the skin to become blue and shortness of breath. Bam Bam was also a pioneer for his defect. TGA is the second most common of the cyanotic anomalies and occurs in 5 to 7% of all congenital cases. TGA is dominantly linked to males as 60 to 70% of all TGA patients are male.

Bam Bam and I were both recovering from open heart surgeries and our parents forged a hospital friendship on the common ground of their children. After my hospital stays Bam Bam and I continued to share a parallel life although we had no contact.

When I was 12 we moved to a small town an hour from where I was born. My mother took me to my new school to get me registered and ready to enter the 7th grade. Upon entering the administration office the office secretary recognized my last name and asked if my first name was Christina. I eyed her cautiously because I had no idea how someone I had never met knew my first name. When I replied and told her that was indeed my name she responded with “You won’t remember me but you shared a crib with my son when you were in the hospital for heart surgery. He goes to school here too.” I got immediately excited and realized the little boy the nurses deemed Bam Bam was real and we would both be going to the same school.

Bam Bam and I still keep in touch to this day as we have an extremely unique commonality and stories no one else could tell. Today Bam Bam works as a press coordinator for NASCAR. After comparing notes we realized that we both shared the same cardiologists in child hood as well as in our starting adulthood. To this day when I see Dr. Bullaboy he asks how Bam Bam is doing and vice versa and gives each advice to give to the other based on our visits with him.

You never know when you will make your first friend in life and what experiences you will share. I consider myself fortunate to have a friend who has been through everything I have and then some.

Parent? Doctor? Counselor? All of the above!

One thing I can promise you if you are a parent of a child with a congenital heart defect is that you will find yourself repeating the following sentences:

“No you cannot participate in (insert cardiovascular sport here)”

“Yes, you can do anything you set your mind to, provided it isn’t running a marathon or being a professional athlete”

“When you get tired, SIT DOWN!”

You will find yourself pushing your kid to be normal while knowing all the while they are not just like all the other kids. I think that is one thing my parents were good at. Growing up I always felt equal even though I was physically inadequate with other kids my age. Luckily for me, I excelled in academics, anything creative and other activities that didn’t require I break a sweat. Sometimes I was disappointed at the things I couldn’t do. I wanted to play the saxophone so badly that I cried when I got a fake one for Christmas. I just didn’t get that I didn’t have enough air to play a real one. Eventually, I learned to trade what I couldn’t do for what I could. My advice to you? Find out what your child is good at besides cardiovascular activities and cheer them on!!! Your job as a parent will be to silently steer them into what they can handle and helping them to avoid major heartbreak by not being able to do what they love.

As for growing at the same rate as other kids… my experience was not terrible. Yeah, I wore my Carter’s out. Yeah, I didn’t walk till I was almost 3. After the age of 3 and after I had my Fontan surgery I started to grow at the same rate as other children and am now 5’7″ and 125 pounds. Mentally the doctors warned my parents that I could be slower than other children so I was tested before going to Kindergarten to make sure I was ready to enter school. Not only was I ready but they found out I was smarter than average kids. YAY me!

Other than the above mentioned trials and tribulations you will also be fighting your kid on a regular basis to take their medicine. After all, we are just like everyone else and everyone else doesn’t take medicine lol. Oh yeah, and one more thing be prepared to go toe to toe with school gym teachers who try to tell you your kid can run the mile with half a heart.

Have no fear, with a lot of love your kid will turn out to be a productive member of society just with more hospital visits, more doctors and more questions about their mortality than the average person 😀

I’m a SMURF!

September 22nd 1983 I took my first breath, who knew it wouldn’t turn me pink like it’s supposed to do to all newborn babies? No one could have predicted that upon taking that first breath I would remain the color of a smurf and set off the fear alarms of all the other people present in the room including my parents, doctors and nurses. The opinion in the delivery room was unanimous, something was seriously wrong. Within two hours of my entry into the world I was riding shot-gun in a pickup truck with my daddy and granny on my way from the hospital nursery to the Children’s Hospital of The King’s Daughters where I was going to be evaluated as if I were an amoeba being looked at under the microscope in a tenth grade biology class.

After a thorough exam and an echocardiogram it was determined that everyone was right, something was wrong and the problem was my heart. I guess somewhere between wherever it is we come from and the womb someone forgot to give me my Tricuspid heart valve and didn’t place the screws tight enough in my Mitral heart valve. Diagnosis? Tricuspid Atresia with Mitral Valve Prolapse.

The definition of Tricuspid Atresia as well as causes, incidence and risk according to the University of Maryland Medical Center and Me:

Tricuspid atresia is a type of in which the tricuspid heart valve is missing or abnormally developed (The creator of the universe didn’t bother to attempt to give me one at all). The defect blocks blood flow from the right atrium (upper) to the right ventricle (lower).

Tricuspid atresia is an uncommon form of congenital heart disease that affects about 5 in every 100,000 live births. Twenty percent of patients with this condition will also have  other heart problems (well this explains the fact that the screws weren’t placed in the door hinges of the other valve).

Normally, blood flows from the body into the right atrium (upper), then through the tricuspid valve (yeah.. that didn’t happen) to the right ventricle (lower) and on to the lungs. If the tricuspid valve does not open (or is MISSING), the blood cannot flow from the right atrium to the right ventricle (well that would be because the right ventricle died). Blood ultimately cannot enter the lungs, where it must go to pick up oxygen and become oxygenated (ahhhh, that explains being blue.. I guess that tends to happen when your blood stays blue due to no flow to your lungs to get oxygen)

Infants with tricuspid atresia generally are cyanotic (SMURFS!) and easily become short of breath (why my mother had to tap on my feet to keep me from falling asleep due to exhaustion while drinking my bottle).

So instead of looking like this inside:

 

I ended up looking like this inside:

And that ladies and gents, was my crazy introduction to this crazy thing called life. Since being diagnosed I have undergone two open heart surgeries. I had a Blalock and Taussig Shunt at the age of five and a half months old and an old style Fontan when I was two and a half years old. I am currently gearing up for round three on the operating table for the Fontan Revision/Maze procedure sometime within the next year.

This first entry is just an introduction, stay tuned to read about reminiscent stories, present day adventures and peeks into the future of a woman who loves with half her heart.