Scotland Gayle Clark
Jan 9, 2006 - Sept 24, 2014
Scotland was born on January 9, 2006. At the time we were unaware that she would be born with Down syndrome. It wasn't until several hours later that her pediatrician came in to give us the news after examining her. At birth her doctor thought her heart sounded fine. A couple of weeks later at her 2-week check-up we were informed that the doctor heard a slight murmur. He instantly referred us to St. Louis Children's Hospital.
At the beginning of February 2006 we made our first trip to St. Louis Children's Hospital. Scotland underwent her first echocardiogram (echo) that showed a substantial heart defect that would require open-heart surgery. Nearly half of all babies born with Down syndrome are born with a heart defect. Scotland's happened to be a complete atrioventricular septal defect (complete AV canal), meaning she had a large hole in her heart, creating one large chamber instead of four separate chambers.
On May 3, 2006 Scotland underwent her first open-heart surgery, at only 4 months old. The surgery went pretty well, with no major complications. The surgeons were particular in that they wanted to make her heart as perfect and efficient as they could, which meant that they repaired, closed, and checked via echo her heart a few different times throughout the ~7 hour surgery. Additionally, where the hole in her heart required repair was the same location as the wiring or communication center of the heart. We were advised that as a result of the surgery she may need a permanent pace-maker implanted. After 6 days Scotland's heart communication had not returned, and her surgeon implanted her permanent pace-maker. Almost a month later we were finally discharged and returned home. Scotland continued to grow and develop, with regular check-ups at St. Louis Children's, as well as home pace-maker checks via phone.
In March 2009 Scotland came down with pneumonia and ended up being hospitalized for about a week. Shortly after, during one of her pace-maker checks from home, we were notified that one of her pace-maker leads was beginning to go bad and needed to be replaced. About a month later this relatively minor surgery was performed (open-chest, but not open-heart). Again, Scotland went on living her life while being closely monitored for a leaky valve that had resulted from her first surgery. Surprisingly, at this point Scotland was not on any heart medications. It wasn't until 2010 or 2011 that her cardiologist decided it was time to add a blood pressure medication in hopes of decreasing the amount of leakiness of the valve.
In March 2012, it was determined by Scotland's cardiologist that it was time to repair her leaky valve surgically. Again, there were no complications but the surgeon did his best to make improvements to the valve. We later realized that it didn't really help.
After waiting and waiting to see improvements in her heart we began to see signs of failure instead. Keep in mind that throughout ALL of this Scotland was never held back by her heart function. She was not sick or confined to a hospital bed. She did everything she wanted. She attended school. She had a great appetite. For all of these we are eternally grateful.
Scotland was referred to the heart failure specialists/team at St. Louis Children's Hospital. In the summer of 2013, we made weekly trips to STL (for 5 weeks) so they could begin a new medication and get her to the max dosage, in hopes of seeing eventual improvement in her heart function. This improvement never came. Nevertheless, the team continued to keep close tabs on Scotland's health, and we were sure to report any changes in her that we noticed. Again, Scotland was living life just as she liked. By looking at her you would have never known she had a bad heart.
In August 2014, we went in for a routine follow-up with her heart failure team. We were informed that Scotland's pace-maker report was showing a new issue with her heart, unbeknownst to us. Scotland had experienced 6-7 episodes of ventricular tachycardia. This was very concerning considering the general unhealthiness of Scotland's heart. We were quickly informed that any of these episodes could lead to a "sudden catastrophic event". We were admitted the next day to begin a new potent medication to hopefully prevent any more of these episodes. Scotland was hospitalized for monitoring for 5 days. Everything went great.
We returned for her next follow-up on September 18, 2014. Scotland's pace-maker report showed NO more episodes. While it appeared the medication was working we were told that in all reality we wouldn't know for sure unless she had another episode...
At 9:24am on September 24, 2014, only 6 days after her last follow-up with her team of heart specialists, Scotland was at school when her heart went into rhythms that quickly lead to ventricular fibrillation. With a healthy heart there is very little that can be done. Given the condition of Scotland's heart, there was even less...
The paramedics were called to the school and arrived in record time due to their close proximity to the school, just by chance. They defibrillated (stand back....clear...shock) her and were able to get a pulse back. It was just after that moment that we arrived at the school. We were so relieved to know they had a pulse...but then they didn't.
After arriving at the ER, with CPR still in-progress, everything was being done to get her pulse back. Scotland's pace-maker was working and sending the signals to her heart. It wasn't until they did a quick ultrasound of her heart that they knew it was over. Scotland's heart had simply given all it could...and it was time for her to return to Heaven.
We quickly found peace in the realization that Scotland was never held back by her heart and was able to do all that she wanted right up until the end. God had called her to return to Him, and there wasn't a single thing that could have been done to change it.
Furthermore, we are forever grateful for all of the love and support we receive after her passing.
Blessed are those who mourn, for they shall be comforted.