Our little boy arrived in August 2011. Soon after his birth, we found out he had a congenital heart defect along with several other issues. He was later diagnosed with CHARGE Syndrome. We are navigating the world of syndromes, genetics, heart defects, and hearing loss... all the while watching our little boy amaze everyone.
This blog chronicles my husband's and my life together, and about the rewards and challenges of raising a medically fragile and special needs child. We lead a life that sometimes takes my breath away, with highs and lows magnified by the desire to create the best possible life for ourselves and our little boy. We live in Santa Monica, which I think might be one of the loveliest places on earth.
Paul and I were high school sweethearts, meeting when I was just 16 years old and worked as a lifeguard at King's Island, an amusement park in Cincinnati, OH. I refused to give him my number for quite some time, but lucky for me he was persistent. We were just friends for several years, then started dating back in 2000. Paul and I lived in separate cities for the first five years of dating, which I really think helped solidify our relationship. We hada beautiful wedding in 2008, and moved to Santa Monica, CA just a few months later.
Notice the cake size in Paul's hand
In 2010, we found out we were expecting our first child. We could not be more excited! I would never say our pregnancy was uneventful - we were amazed at every step. We read books, attended classes, and anxiously awaited our little boy or girl. I had very few complications during the pregnancy, but I did have what I might call a mother's intuition that something wasn't right. I chalked it up to being nervous about our baby's upcoming birth, but I just couldn't shake that feeling, especially the last couple weeks of the pregnancy. I remember mentioning this to a couple of people, then saying, the vast majority of babies are born healthy, I must just be nervous!
Ronan was born with a number of birth defects, which as you'll read in my blog, I absolutely hate categorizing as "defects". Ronan has a congenital heart defect known as pulmonic valvular stenosis. There is also a bit of concern about his heart muscle's thickness, but not enough yet to move forward with further testing. He has moderate to severe hearing loss and wears hearing aids. He also has colobomas, a "cleft" of the eye, and is farsighted. Ronan wears Harry Potter-esque glasses. Ronan has gone through ear well treatments to improve the shape of his ears, and has worn a helmet to help with flattening of his head after open heart surgery. He also developed a facial palsy on his right side. All these things have added up to a clinical diagnosis of possible to probable CHARGE syndrome, a rare syndrome that affects 1:14,000 children. We are in the process of getting genetic testing, but it is still possible we won't be able to confirm his diagnosis.
Ronan's overall prognosis is a work in progress. As with most things with children, we are constantly being told to "wait and see" what Ronan does. Judging by his progress over his first year, he is going to have an amazing life. His progress is made possible by the love and support of our family, friends, coworkers, doctors, and therapists.