Imagine giving birth to a child, only to see him whisked away to neonatal ICU for an unexpected mass found in his neck. Liam was born January 5, 2010. A few hours later we were told the mass was called cystic hygroma. A condition now called lymphatic malformation which affects 1 in 2,000 to 4,000 births. It is a benign condition where the lymphatic vessels did not form properly. It can target other areas of the body. But for Liam it caused multiple cysts throughout his neck, floor of mouth, and tongue. The cause is unknown.
Our world had just drastically changed and would never be the same. Normal “baby” things no longer existed. We poured over the internet and read every article imaginable. We read articles of encouragement and articles of uncertainty and despair.
A few days later, Liam started having difficulty breathing. He had dropped more than 10% of his birth weight because he was using his energy and calories just to breathe. The cysts were interfering with his airway and he required an emergency surgery to place a tube called a tracheostomy to secure his airway and a feeding tube in his belly to supply nutrition if needed.
The nursery at home turned into a make-shift hospital room. Breathing supplies everywhere. Private duty nurses started coming to the house because he needed constant supervision and skilled care. There were some days we thought it was more than we could endure. We would remind ourselves of that pivotal day when our tiny Liam had to go for emergency surgery just to breathe and later that same day endured several more hours in a MRI and CT scan. Both surgery and diagnostic testings required hours of anesthesia for such a small, fragile body. That particular day and the many days that have followed, we knew we had a fighter on our hands. The fighter amazes us every day.
Welcome to Liam’s Land ~ a 501(c)(3) non-profit supporting LM research.