Andrea West met her prospective husband during their last year at university. They fell into a whirlwind romance and moved back to Andreas’ hometown soon after graduating.
In a few short years they had gotten engaged, and soon enough were able to announce to friends and family that Andrea had fallen pregnant with their first child. Andrea was overjoyed.
After just eleven weeks, however, the happiness turned to grief. Andrea miscarried.
This is how Andrea described the feeling on Facebook page Love What Matters:
“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. I didn’t know if I could ever deal with being pregnant again.”
After a while, Andrea’s anxiety was lessened with the help of her supportive husband. Thankfully, she fell pregnant again.
This time around, she promised she would do everything in her power to help her baby grow healthily. She gave up a number of foods, including cold-cut meats, sushi and certain cheeses. She also took to devouring books on pregnancy – this time, she determined, everything would be OK.
Sure enough, her term passed without complications. She began small contractions right on time, went into hospital and was admitted into a delivery room with her partner.
She was about to be sent home, until an ultrasound showed she had little-to-no amniotic fluid left. They had to induce labor immediately.
The birth
Fortunately, the birth went well. Before the end of the night, Andrea and her husband had welcomed a little boy into the world, Adam.
Only, Andrea’s partner never got to cut the umbilical cord as planned.
Instead, Adam was immediately rushed away from his parents in a confusing blur of medical staff. Andrea’s husband was able to catch a glimpse of his son over the shoulder of a group of doctors. He turned back to Andrea and uttered the heartbreaking words: “Honey, there’s something wrong with Adam’s leg.”
Twenty people had gathered around little Adam. The longer time went on without answers, the concerned Andrea grew.
When Andrea’s mom and partner left to inform family members outside, she lay alone in the ward, not knowing what was happening. Still, no one told her what was wrong with her baby.
It transpired that the right side of his stomach and his entire right leg were marbled purple and black.
The diagnosis
After a time, Adam was diagnosed with Cutis Marmorata Telangiectatica Congenita (CMTC), an extremely rare vascular malformation.
Andrea and her husband didn’t know how to react. At the time of their son’s birth, there had been only 500 reported cases of the disease in the world … ever.
Adam underwent a multitude of tests on his vital organs, which, fortunately, he passed without issue. Andrea spent so much time in the NICU that she didn’t sleep for four days.
In the end, Adam was able to go home, with a strict set of instructions on how to care for his skin. The more time that went by, however, the more it became apparent that Adam was a true fighter.
Today, he’s a happy, healthy young boy who loves math and playing chess. He’s even been able to play sports, though his condition makes his leg weak.
Through it all, despite the fact Adam knows he’s slightly different from the other children, he’s never seen his disability as an obstacle.
Andrea West continues to be actively involved in CMTC Alliance, a global non-profit organization that empowers individuals diagnosed with rare vascular malformations. She passionately works to spread awareness about these conditions and advocates for those affected.
If you’d like to support the organization and help more people with rare diseases, please consider sharing Adam’s story and making a donation. Your contribution can make a meaningful difference in the lives of those facing uncommon illnesses.