“I met my husband when I was 22 years old. We were seniors at James Madison University (go Dukes!) and came from two different states. I am a native to New Jersey and he to Virginia. We graduated a mere 3 months after we started dating and were unsure what the future held for us. Little did we know how the next 6 years of our lives would play out.
He ended up moving to New Jersey a year after we graduated and proposed to me the day we moved into our own apartment. In October of 2006, we were married. We bought our first home in March 2007 and found out we were pregnant with our first child a little over a year later. My due date was January 26, 2009, a few days before my mom’s birthday. My mom is the calmest, most patient person I have ever met. I was thrilled to have a baby born around the same time as my mom, hoping he or she picked up some of her personality traits that passed me by. (I have little patience and no one would ever describe me as calm!)
We went to NYC for my husband’s birthday in June 2008 when I was 11 weeks pregnant to see The Little Mermaid on Broadway with his parents. I am obsessed with the movie (and Disney in general) so this was to be a fabulous trip. To my horror, I started spotting not long after the show was over. We ended up going to dinner but I knew the whole time something just wasn’t right. My in-laws brought me to the ER back home where I found out what I knew to be true the second I started spotting. I had lost my baby. I was an absolute wreck. I didn’t know what to do, who to talk to, what was appropriate to discuss, or who could help me. Little did I know that 1 in 4 women suffer the same and people just don’t talk about it. (Let’s change THAT narrative!)
I didn’t know if I could ever deal with being pregnant again. I am overweight (certainly what caused me to lose my first child – in my mind – at least) and my anxiety was in full force. I worked through my emotions together with my husband (he is a wonderful man) and we found out we were pregnant just after Christmas that same year. My rainbow baby. I did EVERYTHING right this pregnancy. I didn’t drink any diet soda (my life blood), didn’t eat lunch meat, soft cheese, sushi… nothing on the ‘naughty list.’ I followed the blogs and community pages. I read the books and set up my nursery the ‘right’ way. When I found out I was having a boy my heart grew 3 sizes. I have always had many guy friends and I couldn’t wait to be a ‘boy mom!’
His due date was September 21, 2009. I started having small contractions that day and, of course, being a paranoid first-time mom, went to the hospital. They were about to send me home but the ultrasound showed I had little-to-no amniotic fluid left so they kept me and induced labor. My labor was hard, I was induced at 10 a.m. on September 21 and had all sorts of procedures to try to get my labor progressing. By 9 p.m. on September 22, the doctor told me if I didn’t have my baby by 9:30 they were going to rush me to an emergency C-section. I think I actually became Wonder Woman in that moment. I was absolutely determined to have this child MY way. He was born at 9:38 p.m. We decided to name him after my husband’s college roommate who passed away at 21 from a brain tumor. This means our child’s name became Adam West. Let the Batman jokes begin…
After he finally made his debut, the doctor quickly cut the umbilical cord leaving me confused as to why they didn’t ask my husband to cut the cord. My husband and mom were in the room with me (something for which I will forever be grateful) and accompanied our Adam over to the cart where he was cleaned up and weighed. Then, slowly, my husband walked back to me and said… ‘Honey, there is something wrong with Adam’s leg.’ I was exhausted, a bit delirious, and just wanted to hold my baby, but I will never forget my response. ‘I’m sure it’s just a bruise.’ I gave birth in a teaching hospital and before I knew it at least 20 different people were in the room. Doctors, nurses, and students got to see my newborn baby before I got to really see him. They brought him over to me for a few minutes before whisking him off to the NICU. Then… everyone left. My mom went to tell my Dad and brother that Adam was born. My husband left to tell his parents the same. The doctors and nurses went to tend to other patients. So there I was, alone with my thoughts, thinking what the heck just happened?!?
The next few hours were sort of a blur but, eventually, I was able to see my beautiful 8 lb. 5 oz. baby in the NICU. The nurses were all loving on this giant baby as they are normally holding preemies! The attending physician in the NICU had been working at our hospital for over 30 years and had no idea what was going on with our baby’s skin which was purple/black marbled on the right side of his abdomen and down his whole right leg. She took photos and sent them to the attending dermatologist who diagnosed our Adam with Cutis Marmorata Telangiectatica Congenita (CMTC). I’m sorry… WHAT?
I spent the entire night researching, I don’t think I slept for more than an hour. I found out that CMTC is an extremely rare vascular malformation with less than 500 cases (at the time) ever reported. In. The. World. My mind didn’t know what to do with this information. How does one process this sort of rarity? In my mind he was the most beautiful thing I had ever laid my eyes on. My rainbow baby. But, would he be OK? I was euphoric and crushed at the same time.
He went through a battery of tests during his 3-day stint in the NICU. He had a brain ultrasound, an abdominal ultrasound, testing of his kidney and liver function, a heart ultrasound, and a glaucoma screening. Thankfully, he passed all of these tests. The hospital couldn’t have been more wonderful to me and let me stay in a room even after I was discharged because they knew I had to be close to my baby. I had to walk a lot to see him, developed NICU ankles (as the nurses so gracefully described the blow-up feature of the bottom of my legs), and didn’t sleep much for four days. My mind was racing way too much to sleep.
We ended up taking him home with instructions to care for his knee where the skin hadn’t quite finished developing and looked black. Changing dressings, applying petroleum jelly, and being careful not to bump it so as to not open the wound more was not in any pregnancy book I so diligently read prior to giving birth.
We made follow up appointments with a dermatologist, geneticist, and orthopedist. Every test came back ‘normal.’ He baffled them all. We were told a list of things to watch out for and sent on our way.
In July of 2009 we were fortunate enough to attend a conference in Washington D.C. where we met other families with children who also have CMTC. I joined the board of directors for the CMTC-OVM U.S. organization in 2012. We host an annual conference for families who have loved ones affected by CMTC and other vascular malformations (OVM) each summer. The information our esteemed physicians and families bring to each other is more than I could have ever imagined.
We have since seen many doctors including an ER physician who gave us the side eye when he saw his markings and asked if they were a result of his injury (insinuating something much, much worse). No, marbled skin on his abdomen and leg are not because he’s a 6 year old boy who jumped off the couch and broke his ankle. We have educated more doctors than I can remember with information on his diagnosis when we were told ‘I’ve never heard of that.’ My typical response is ‘most people haven’t.’
My biggest fear when he was born was that he wasn’t going to fit in, kids were going to make fun of him, and he was going to end up hating that he was different. I am so proud to say that not only do I have my rainbow baby, but my amazing young son. He is bright, loves math, playing chess, and above all else, Harry Potter. He has tried his hand at taekwondo and baseball (despite being diagnosed with low muscle tone), and is even learning to play the oboe! He has never let his difference keep him down. Adam is truly one of kind and loves his ‘special skin.’”
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