Have you ever been at a point in your life when what seems to be a tragedy is the best thing that could have ever happened to you?
On November 8, 1997, my daughter, Bria arrived. After the first few minutes of joy, I remember thinking, Why isn’t she crying? Then, wait! Where is everyone going? I want to see her too. Don’t leave! I didn’t get to hold her and you don’t even know her name…. Then what seemed like hours later, physicians were urging me to sign papers for surgery. I remember the physician explaining what seemed impossible. I remember screaming, “What is this thing VATER-Syndrome, Cloaca? What? What!” Everything after that was a blur.
The initials in V.A.T.E.R. syndrome refer to five different areas in which a child may have abnormalities: Vertebrae, Anus, Trachea, Esophagus, and Renal (kidneys). There may also be cardiac and limb conditions, which change the acronym to V.A.C.T.E.R.L. A child diagnosed with one of these syndromes will not necessarily have a problem in every area, but a constellation of birth defects involving many of the areas. My daughter had every aspect of the V.A.T.E.R. except for the limb condition. Bria has two extra vertebras, she was born without an anus, she has Trachea Malacia, her esophagus and stomach were not attached and she has renal disease. Bria was also born with Cloaca, which is defined as a confluence of the rectum, vagina, and urethra into a single common channel. This defect has been considered one of the most formidable challenges in pediatric surgery. The goals of treatment include achieving bowel and urinary control, as well as normal sexual function. Bria did not have a urethra when she was born. Everything collected in her uterus.
Bria was also born prematurely, and because of that she has chronic lung disease accompanied by asthma. She also has a heart condition. To date, Bria has undergone 43 surgical procedures to revise her entire anatomy. That’s why I call her my Humpty Dumpty--because doctors literally put her back together again. Through it all Bria has always been strong; for example, she will tell you that she is okay after a seventeen hour surgical procedure. Once I remember her asking if she could go to the play room with all her tubes, stitches, machines. The doctor explained to her what she had been through and said, “Maybe tomorrow.” The next day when Bria reminded him, he said, “Well, if she wants to go, let’s give it a try.” With a lot of assistance, we got her into a wheel chair. She could barely hold her head up. I felt weak and dizzy just watching her; yet she was the one who smiled and helped me find the way.
Bria’s first shower was at the age of ten. Before that she had so many tubes attached that it was impossible. I was multi-tasking when I thought her crying in the bathroom. I ran to her in a panic. With water streaming over her for the first time, she asked, “Mommy is this what it feels like when you take a shower?” I began to cry. My world was so full of rushing that I couldn’t remember what it was like to take my time to enjoy anything. It was then I decided we will live moment-by-moment.
In spite of these times of enlightenment and joy, hardship came as well. In 2010 Bria had been hospitalized for the entire summer. As a single mother of two, I was unable to work and had exhausted all of my savings. I was unable to pay my bills, my lights and gas were disconnected and I was pending eviction. All our food was spoiled. I was unable to receive help from the family I had reached out to. My son, Brendan continued to tell me that everything would work out and he was right. In November 2010, Just Heart Foundation lifted the burden by paying my power bill. As we continue through the revolving door, we will never forget what Just Heart Foundation did for us. They are truly Just Heart….
The Merrion Family