Our family’s story: Finding a second home after CLOVES diagnosis

Oliviah, Kollins and Adleigh In July 2013, our family of four crowded into a tiny room at the Women’s Health Clinic in  Casper, Wyoming. We were so excited to find out if our third child would be a boy or a girl, and our daughters Adleigh and Oliviah had their own hopes. We had waited for this day for so long, and for our daughters, it seemed like an eternity. The day had finally come, and we all celebrated the fact that we would welcome a baby boy. Our excitement lasted just a few minutes, though, as our obstetrician noticed a “bump” underneath our baby boy’s right arm. We were quickly sent to Rocky Mountain Hospital for Children in Denver, Colorado. Doctors there were mesmerized by this “bump,” and kept a very close eye on it for the rest of the pregnancy. Our miracle — Kollins Holbrook — arrived on October 16, 2013. Our team of over a dozen doctors had prepared us for the possibility that our baby might not survive and were ready to revive him at birth, but Kollins surprised everyone. He was thriving. Just hours into the world, Kollins had his first of a lifetime of MRIs. His bump soon had an official name — cystic hygroma. Although very close to his heart and lungs, it didn’t pose an immediate threat to him internally. We went home a few days later and were hopeful about getting a plan in place to remove Kollins’ bump and move on. We soon found out Kollins’ condition was a much more complex situation than we had ever imagined. As he grew, ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & conditions Our patients’ stories parenting CLOVES Dr. Ahmad Alomari Dr. Cameron Trenor Dr. Steven Fishman rare disease Source Type: news