“When I was 22 years old, I met my husband. We were both seniors at James Madison University (go Dukes!) and from different parts of the country. I was born in New Jersey, and he was born in Virginia. We had just been together for three months when we graduated, and we had no idea what the future held for us. We had no idea how the following six years of our lives would unfold.
A year after we graduated, he went to New Jersey and proposed to me on the day we moved into our own apartment. We tied the knot in October of 2006. We purchased our first house in March 2007 and learned we were expecting our first kid a year later. My due date was January 26, 2009, which happened to be a few days before my mother’s birthday. My mother is the most composed and patient person I’ve ever met. I was overjoyed to have a kid born around the same time as my mother, hoping that he or she would inherit some of my mother’s personality qualities. (I don’t have a lot of patience, and no one would ever call me calm!)
We went to see The Little Mermaid on Broadway with his parents for my husband’s birthday in June 2008, when I was 11 weeks pregnant. This was going to be a fantastic trip because I am infatuated with the movie (and Disney in general). I began spotting shortly after the event ended, much to my surprise. We went out to supper, but I had a feeling something wasn’t quite right the whole time. My in-laws took me to the ER back home, where I learned what I had suspected from the first spotting. My baby had died. I was a complete mess. I had no idea what to do, who to talk to, what to talk about, or who could help me. I had no idea that 1 in every 4 women goes through the same thing, and that it’s just not talked about. (Let’s rewrite that story!)
I wasn’t sure I’d ever been able to cope with being pregnant again. I was overweight (which, in my opinion, was the cause of my first child’s death) and my anxiety was at an all-time high. We found out we were pregnant shortly after Christmas that same year after I worked through my feelings with my husband (who is a fantastic man). My rainbow-colored infant. During this pregnancy, I did everything properly. I didn’t drink diet Pepsi (which is my lifeblood), ate no lunch meat, soft cheese, sushi, or anything else on the ‘naughty list.’ I kept up with the blogs and social media pages. I studied the books and did everything the ‘correct’ way when it came to setting up my nursery. My heart grew three sizes when I found out I was having a boy. I’ve always had a lot of guy pals, and I was so excited to be a ‘boy mom!’
On September 21, 2009, he was due. That day, I began feeling tiny contractions, and, being a worried first-time mom, I headed to the hospital. They were going to send me home when an ultrasound revealed that I had little to no amniotic fluid remaining, so I was hospitalized and labor was induced. My labor was difficult; I was induced at 10 a.m. on September 21 and underwent a variety of procedures in an attempt to speed up my delivery. On September 22, around 9 p.m., the doctor informed me that if I didn’t have my baby by 9:30 p.m., I would be rushed to an emergency C-section. At that moment, I believe I became Wonder Woman. I was dead set on having this child the way I wanted it. At 9:38 p.m., he was born. We chose the name after my husband’s college buddy, who died of a brain tumor at the age of 21. As a result, our child’s name was changed to Adam West. Let the jokes about Batman begin…
The doctor promptly cut the umbilical cord when he made his debut, leaving me perplexed as to why they didn’t ask my husband to do so. My husband and mother were in the room with me (for which I am eternally grateful) and escorted our Adam to the cart, where he was cleaned and weighed. ‘Honey, there’s something wrong with Adam’s leg,’ my husband remarked slowly as he walked back to me. I was fatigued, a little delirious, and all I wanted to do was hold my baby, but my reaction will live with me forever. ‘I’m sure it’s only a bruise,’ says the narrator. I gave delivery in a teaching hospital, and there were at least 20 people in the room before I realized it. Doctors, nurses, and students had the opportunity to see my newborn baby before I did. Before hauling him away to the NICU, they brought him over to me for a few minutes. After that, everyone left. My mother proceeded to inform my father and brother of Adam’s birth. My husband went to his folks to tell them the same thing. Other patients required the attention of doctors and nurses. So there I was, alone with my thoughts, wondering what had happened?!
The next few hours were a blur, but I was finally able to see my lovely 8-pound-5-ounce baby in the NICU. The nurses were all adoring this massive baby, despite the fact that they are used to cradling preemies! Our baby’s skin was purple/black marbled over the right side of his belly and down his entire right leg, and the attending physician in the NICU had been working at our hospital for almost 30 years and had no idea what was wrong. Our Adam was diagnosed with Cutis Marmorata Telangiectatica Congenital after she took images and forwarded them to the attending dermatologist (CMTC). I apologize… WHAT?
I didn’t sleep for more than an hour because I spent the entire night researching. I discovered that CMTC is an extremely rare vascular abnormality, with fewer than 500 cases ever reported (at the time). It. Is. In. The. World. My brain couldn’t figure out what to do with all of this information. How does one deal with such a rarity? He was, in my opinion, the most beautiful thing I had ever seen. My rainbow-colored infant. But, would he be all right? At the same moment, I was thrilled and crushed.
During his three days in the NICU, he underwent a battery of testing. A brain ultrasound, an abdomen ultrasound, kidney and liver function testing, a heart ultrasound, and a glaucoma screening were all performed on him. Fortunately, he passed all of them. The hospital was great to me and allowed me to stay in a room after I was discharged since they knew I needed to be near my kid. I had to walk a long distance to see him, acquired NICU ankles (as the nurses so eloquently termed the swelling at the bottom of my legs), and didn’t get much sleep for four days. My mind was running much too fast for me to fall asleep.
We ended up taking him home with instructions on how to care for his knee, which had not yet fully developed and seemed black. Changing dressings, applying petroleum jelly, and being careful not to bump it in order to avoid further opening of the wound were not included in any of the pregnancy books I read before giving birth.
We booked appointments with a dermatologist, a geneticist, and an orthopedist for follow-up. Every test resulted in a ‘normal’ result. He perplexed everyone. We were given a checklist of items to look out for before being sent on our way.
We were fortunate enough to attend a conference in Washington, D.C. in July 2009, where we met other families who had children with CMTC. In 2012, I became a member of the CMTC-OVM U.S. board of directors. Each summer, we host a conference for families who have loved ones with CMTC and other vascular malformations (OVM). I could never have guessed how much information our great physicians and families share with one another.
We’ve seen a lot of doctors since then, including one ER doctor who gave us the side-eye when he saw his scars and inquired if they were caused by his injuries (insinuating something much, much worse). It’s not because he’s a 6-year-old boy who leaped off the couch and fractured his ankle that he has marbled skin on his tummy and leg. We’ve taught more doctors than I can remember about his diagnosis when we’ve been told, “I’ve never heard of it.” “Most people haven’t,” I usually respond.
My greatest fear when he was born was that he wouldn’t fit in, that kids would make fun of him, and that he would grow up to despise his differences. Not only do I have my rainbow baby, but I also have an incredible young son. He is intelligent, enjoys math, chess, and, above all, Harry Potter. Despite being diagnosed with low muscle tone, he has attempted taekwondo and baseball, and is even trying to play the oboe! He’s never allowed his differences to get in the way of his success. Adam is a one-of-a-kind individual who adores his special skin.'”
The story and photos: Courtesy of Andrea West