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, so did the hygroma. We also were aware this meant the bigger it got, the closer it came to his internal organs.
Surgery, we were told, was not an option yet. Kollins was too small, and the hygroma was connected to his brachial plexus (the network of nerves near the neck and shoulder). The risk of complications was high.
Kollins’ specialists in Denver weren’t sure what to do and sent us to Cincinnati Children’s Hospital when he was six months old.
Doctors in Cincinnati changed Kollins’ diagnosis to something called capillary lymphatic venus malformation (CLVM), but they followed suit with his Denver doctors in continuing to manage his situation and see how it progressed. They tracked Kollins’ hygroma every few months with MRIs.
But we soon we faced another complication — similar malformations and tumors were appearing on Kollins’ back. When he was 15 months old, Kollins’ doctors recommended a clinical study and prescribed an immunosuppressant to try to shrink the growths before performing any procedures.
Because the drug depleted his immune system, every few months Kollins stayed overnight at Rocky Mountain Hospital for Children for intravenous immunoglobulin (IVIG) therapy to protect him from infections.
A rare disease
We did much research on the doctors linked to hygroma and CLVM. Our family had experienced a lot of unknowns, maybes and “we will monitor it” in the past 30 months.
It was getting harder and harder to accept this as we watched the malformations progressively get bigger. None of the doctors we met had come across a case like Kollins because it was so rare.
Kollins’ primary doctor in Denver began to suspect he had something that “looked like CLOVES (congenital lipomatous overgrowth, vascular malformations, epidermal nevis, spinal/skeletal anomalies/scoliosis syndrome) syndrome.”
He recommended we take Kollins to Boston Children’s Hospital for answers. We had high hopes and like many others, turned to Boston for its world-renowned doctors.
Answers — at last
There are fewer than 150 people in the world who have CLOVES. Much more rare than we had ever imagined.
But we knew we were in the right place, as CLOVES syndrome was first discovered by a Boston Children’s physician, Dr. Ahmad Alomari.
After hours and hours of learning about what our son would be facing, we walked out of Boston Children’s with something we had never had before with Kollins — answers. We know Kollins has a long road ahead, but we take great comfort from knowing he will be in good hands from now on.
Dr. Trenor has continued Kollins’ immunosuppressant therapy. Every few months, we take Kollins to Denver for an MRI. His Boston doctors are reviewing these MRIs to decide when to time his first surgery to remove the hygroma, which is starting to interfere with the growth of his ribs and lungs on his right side.
We know surgery is tricky because the growth will return, so Kollins will need repeat surgeries in Boston.
Back home in Casper, Wyoming, we continue to process the rarity of our son’s condition. We are blessed with an incredible community that has supported us through every step of this journey. We are always grateful for the prayers, meals and hugs that continue to come our way. The local community health center has even dedicated a wall to Kollins!
Boston gave us some great groups to connect with, and families across the world dealing with CLOVES have wiped away our feeling of loneliness in the situation. It’s nice to be home; at the same time we are anxious to get back to Kollins’ new second home in Boston.