Our Story

A young infant, named Liam was born on November 1, 2013 to a young couple in Durango, CO. In March, Liam was 4 months old when his mother took a trip to her hometown of Wrangell, Alaska to visit her family and friends whom had never met her son. During their trip, Liam became sick with a bad cold and eventually had to be admitted into the Wrangell hospital with RSV, a respiratory virus.   Liam struggled with respiratory issues but even worse he was eventually diagnosed with heart failure. Liam was airlifted to Seattle Children’s Hospital. The doctors diagnosed Liam with Idiopathic Dilated Cardiomyopathy. His heart was very sick.

On the flight to Seattle, it was touch & go with constant medical monitoring of Liam’s status.  When they arrived at Seattle Children’s Hospital and throughout the flight, Liam would require CPR numerous times and eventually had to be placed on an ECMO machine. (An ECMO machine is similar to the heart-lung by-pass machine used in open-heart surgery. It pumps and oxygenates a patient’s blood outside the body, allowing the heart and lungs to rest.)

 

Liam fought like a warrior with trials on and off the heart & lung machine to see if his little body could rally.   His lungs would work for a time but his heart still wasn’t strong enough to pump the blood everywhere it needed to be. The doctors explained that the left ventricle of Liam’s heart was enlarged and that the septum, which separates the chambers of heart, was not working as it should. 

The medical team decided to try a pace maker but Liam’s heart continued to struggle.  With the pace maker not making a difference they had hoped, the Doctors & medical staff began to discuss options with Liam’s parents and eventually recommended the possibility of him needing a new heart.   Liam’s mom & dad made the decision to put Liam on the transplant list. They were told the wait list for a new organ could be anywhere from 3-9 months.  

Liam would stay in the Intensive Care Unit at Seattle Children’s Hospital with his parents at his side connected to machines keeping him alive while he waited for a new heart. 

The “new normal” for this young family was being right by Liam’s side for various procedures, trials on & off the breathing tubes, and trials of various medications or trials on/off the ECMO machine.  His parents were hoping for any sign of improvement they could grab on to.  They also attended medical rounds daily to hear how Liam had done through the night.  What was the plan for the day, what procedures or tests would be done. And more importantly how could Mom & Dad be a part of Liam’s care for that day.  

On the morning of April 19, it was a good start to their day, because when they went to see Liam and the staff was preparing to take out his breathing tube!!  Liam’s mom & dad were ecstatic with his progress and their feeling was that things were going in the right direction.  It was a good day, but got better.  They received the news that a new heart had become available.  Liam was to receive a new heart that day!  He had been on the wait list for only three weeks.

The feelings that this young couple had were ones of pure joy along with an extreme sadness as it meant another family’s baby had passed.  They would receive the ultimate gift of life for Liam and this other family’s sacrifice would always be present in their minds.  The surgery would occur later that day, finishing around midnight.  The doctors came out to the waiting room at 12:05 am to let the parents know the surgery went well and Liam had done beautifully. It was Easter Morning! a new favorite holiday for this family!  

 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.