I went into labour with Kat about 3 a.m. on September 9, 1992, just a few short hours after watching “An Evening at the Improv.” She was two weeks early and I joked that she was merely curious about what all the laughter was about!
It took a full 24 hours – and assistance from Dr. Burnett – before Katarina Cosette entered the world. I was exhausted and elated – here was my first baby, my beautiful, perfect little girl.
Our pediatrician stopped by later that morning. They had detected a heart murmur and wanted to run some tests. Many babies had murmurs, he explained, but they needed to be sure. I remember looking at this tiny little creature, so beautiful and perfect … surely everything would be fine.
The next morning, the pediatrician returned. He had bad news. Kat had problems with her heart. She was in the NICU at the Royal Alexandra Hospital, but they were transferring her to the University of Alberta hospital. I don’t remember much of what was said, but I remember being asked if I wanted to be transferred as well. I asked to be released – I wanted to go home and try to understand what was going on with my baby.
I remember going to the U of A, where we met Dr. Robertson. My husband, my parents and I sat in a room where he explained the issues with Kat’s heart. She was born with two congenital heart defects: patent ductus arteriosis (PDA) and arterial pulmonary stenosis. I saw the diagrams he drew on the board, I heard him explain what the conditions meant, but it all felt so surreal.
He explained the procedures for going in to see her: scrub, gown, no more than two visitors at a time. For the first visit, he made an exception and we went as a family to go see Kat in her bassinette in the NICU.
The room was filled with rows of babies, all in varying degrees of illness. We walked past as one poor baby was undergoing a procedure; others were under lights to treat severe jaundice. I couldn’t believe my baby was sick enough to be in here.
Kat stayed in the NICU for the first two weeks of her life. I spent as much time with her as I could and I remember people coming by and looking at this chubby, pink little girl, asking “What’s wrong with her??” They didn’t see the faint tinge of blue around her little rosebud lips, that there was more going on beneath the surface that couldn’t be seen.
Kat had many tests before and after she left the U of A. Echocardiograms, EKGs, ultrasounds. I think the most horrific was the chest x-ray, where we balanced her on a bicycle seat and lifted her arms as a clear plastic brace completely encased her to hold her still for the x-ray. She screamed in terror and I cried right along with her. But Kat, being such a brave little girl, eventually got used to the procedures and took them all in stride.
Finally, after a couple of months, the PDA had closed, but that put more pressure on the constricted valve in her pulmonary artery.
At six months of age, Dr. Robertson determined Kat was strong enough – and the gradient was high enough – that it was time to act.
It was an early March day when we brought Kat in for the balloon catheterization procedure. As it was explained to us, they would insert a catheter in the artery of her leg and thread it up to the constricted valve in her heart, where they would inflate a balloon with saline to tear gently the edges of the valve.
There is no image more haunting than being in the cold, sterile procedure room, trying to console a frantic baby on an operating table as they anesthetize her, then – suddenly – she is silent and still. As a young mother, frantic and scared, the two or so hours it took to do the procedure seemed to take a lifetime.
The procedure was a success and the pressure gradient dropped substantially. The prognosis was good. But one thing we quickly realized is that a CHD baby grows to be a CHD child, to a CHD teen, and eventually grows to become a CHD adult. There are treatments, but there is no cure.
Over the years, we have learned the precautions that have to be taken, by us as her parents and by Kat herself. We continue to visit the cardiologist every couple of years, something she will need to do for the rest of her life. We ensure that all physicians and teachers – everyone – know that Kat has this condition, that she underwent this procedure, and that there are risks, particularly if she gets an infection that travels through her bloodstream to the torn edges of her valve, causing a life-threatening condition. It is something we are always aware of, yet we never let it restrict how Kat should live her life.
Kat has grown into an amazing young lady. She is very independent, something I attribute to her two weeks in the NICU. She is strong, a talented artist (these are her drawings), and a faithful friend. She is a wonderful big sister to her equally amazing younger sister, Allie, who was born three years later. My two girls are the light of my life.
While I wish Kat never had to go through what she has endured, I also recognize it has helped make her who she is – a strong, independent woman. And because of her, I have learned more about CHD and how important it is to educate and support people going through this very scary time. Kat’s condition wasn’t as severe as other children I have seen over the years and I admire the strength of the families – and particularly the children – who are so brave as they face the multitude of challenges CHD brings.
I have long wanted to provide support to CHD families, but never knew how. Treasure Life has afforded me this wonderful opportunity and Kat, Allie and I have committed ourselves to this very worthy organization.