Mom Shares Powerful Story of Raising Her Rainbow Baby With a Rare Skin Disorder
Andrea West's son Adam was born with an extremely rare skin disorder. Now, she's sharing his story to celebrate him and raise awareness about Cutis Marmorata Telangiectatica Congenita (CMTC).
Parenthood is filled with surprises, bumps, and bends in the road you never saw coming. For a 37-year-old mom from Cherry Hill, New Jersey named Andrea West, one twist came in the form of her rainbow baby, Adam, and a turn came when she and her husband learned, soon after their son's arrival, that he had a rare congenital skin disorder called Cutis Marmorata Telangiectatica Congenita (CMTC).
When West learned she was pregnant with Adam, it had only been a few months since she had suffered a pregnancy loss at 11 weeks along. This time, she was determined to "do EVERYTHING right." "I didn’t drink any diet soda (my lifeblood), didn’t eat lunch meat, soft cheese, sushi… nothing on the ‘naughty list,'" she wrote on Love What Matters. “I followed the blogs and community pages. I read the books and set up my nursery the ‘right’ way.”
All went well through her pregnancy, but minutes after she gave birth, she says her husband said, "Honey, there's 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.'" The skin discoloration actually was a mark of CMTC, which is characterized by discolored patches of skin caused by widened (dilated) surface blood vessels, according to the National Organization for Rare Disorders. As a result, the skin has a purple or blue "marbled" or "fishnet" appearance. While West reports that no more than 500 cases have been identified in the world, NORD notes that fewer than 300 cases of CMTC have been reported in the medical literature.
“My mind didn’t know what to do with this information," West shared. "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.”
In addition to grappling with the information herself, West has had to continually teach health care providers about the disorder—and contend with utterly undue judgment from those who are unfamiliar with the condition. "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)," she wrote. "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.’"
But over the years, the West family has gotten more comfortable discussing CMTC. And West reports that her son is comfortable in his unique skin. “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,” she shared. “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 never let his difference keep him down. Adam is truly one of kind and loves his ‘special skin’.”
And that's why she wanted to share their experience on Love What Matters.
"I was inspired to tell my story, because my son means the world to me," West tells Parents.com. "He is fighting a battle that he knows more about than so many trained medical professionals, and he’s only 9! I want to show him it’s OK to always be yourself and be PROUD of being different. To never let his differences hold him back."
In the process of sharing her story, she's received tons of heartfelt, encouraging feedback, West says. "People have been so kind, have offered so many words of encouragement and love, and I’ve even helped a few folks make connections to hopefully lead a proper diagnosis for their rare skin disorder!" she tells Parents.com.
She also aims to spread awareness about the global non-profit organization CMTC-OVM US. "It is fairly new, and we want to make sure everyone with CMTC and other vascular malformations have a family of people who will care, nurture, network, and try to get our rare diseases some research in the medical field," West explains. "There are thousands of rare diseases in the U.S., classified by fewer than 20,000 reported cases). When our kids have something with less than 1,000 reported cases, in the world, it is certainly an uphill battle to spread awareness. Of course that won’t keep me from trying!"