Mom delivers baby, forbidden from holding him when dad utters: “There’s something wrong with Adam’s leg”

Andrea West met her future husband during their final year of college, and the two quickly fell into a passionate romance. After graduating, they moved back to Andrea’s hometown. In no time, they were engaged and thrilled to announce that Andrea was expecting their first child. Andrea was overjoyed.

Sadly, their joy was short-lived. After just eleven weeks, Andrea suffered a miscarriage. “I was devastated. I had no idea what to do, who to talk to, or how to cope. I later learned that 1 in 4 women experience this, yet it’s rarely discussed. I didn’t think I could handle another pregnancy,” Andrea reflected.

With her husband’s steadfast support, Andrea’s anxiety gradually eased. She eventually became pregnant again and resolved to do everything possible to ensure the health of her baby. She abstained from certain foods like cold-cut meats, sushi, and select cheeses. She also read numerous pregnancy books, committed to the baby’s well-being.

Time passed without complications, and Andrea began to feel reassured. When she began experiencing mild contractions at the expected time, she went to the hospital. However, an ultrasound revealed dangerously low levels of amniotic fluid, prompting the medical team to induce labor immediately.

Their Baby is Born

The delivery went smoothly, and before nightfall, Andrea and her husband welcomed their son, Adam, into the world. But their initial joy was quickly overshadowed. Instead of cutting the umbilical cord, Andrea’s partner saw medical staff swiftly taking Adam away.

What Happened to Baby Adam

Amidst the chaos, he got a fleeting glimpse of their son being attended to by doctors, then turned to Andrea with a worrying statement, “Honey, there’s something wrong with Adam’s leg.” A team of twenty medical professionals surrounded Adam, heightening Andrea’s concern as she remained uninformed.

Left alone in the ward while her mother and partner updated their waiting family, Andrea was in the dark about Adam’s condition. It was later revealed that Adam’s right abdomen and entire right leg had a troubling marbled pattern of purple and black discoloration.

The Diagnosis: CMTC

Adam was diagnosed with Cutis Marmorata Telangiectatica Congenita (CMTC), a rare vascular malformation. At the time of Adam’s birth, only 500 cases had been reported worldwide. Despite numerous tests on his vital organs, Adam fortunately passed them all without complications. Andrea spent countless hours in the Neonatal Intensive Care Unit (NICU), often going without sleep. Eventually, Adam was discharged with a strict care routine for his unique skin condition.

What is Cutis Marmorata Telangiectatica Congenita (CMTC)?

CMTC is a rare congenital disorder marked by discolored skin patches due to dilated blood vessels, creating a marbled or fishnet-like appearance, often with purple or blue hues. In some cases, individuals with CMTC may have additional skin defects known as aplasia cutis.

It’s important to note that CMTC can be linked with other conditions like Adams-Oliver syndrome, which includes other abnormalities such as nevus flammeus (pink or dark red skin patches), hemiatrophy (muscle wasting on one side), glaucoma (increased eye pressure), and hypotrophy (underdeveloped leg). Many of these cases might actually represent forms of Klippel-Trenaunay syndrome or similar disorders.

The most common association in true CMTC is soft tissue hypoplasia, involving subcutaneous fat and muscle. Previously, a condition known as macrocephaly-cutis marmorata telangiectatica congenita (M-CMTC) was reclassified as macrocephaly-capillary malformation (M-CM/MCAP). Most CMTC cases occur randomly and are thought to result from genetic mosaicism.

Tough as Nails, Adam Never Gave Up

According to Love What Matters, Adam is a remarkable fighter. Today, he is a healthy and joyful young boy, with a keen interest in mathematics and chess. Despite the weakness in his leg, Adam has participated in sports.

In a heartfelt post shared by Andrea West on March 5, 2022, she wrote, “Despite knowing he’s different from other kids, Adam never sees his disability as an obstacle.” Andrea remains actively involved with the CMTC Alliance, a global nonprofit aiming to support those with rare vascular malformations.

She dedicates herself to raising awareness about CMTC, advocating for those affected by it. If you would like to support the organization, please consider sharing Adam’s story and making a donation. Your contribution can help improve the lives of those affected by rare diseases like CMTC.