Little Warrior Spencer

PC: Grace Keller and Kristen Wall

PC: Grace Keller and Kristen Wall

FEBRUARY AMERICAN HEART MONTH

My name is Anna Anderson, and I’m thrilled to be sharing my story here on BWP blog. You see, February, or “heart month” as it’s called around my house, is deeply personal. Nearly seven years ago, following a very easy pregnancy, I began having near constant contractions. This landed me on bed rest and observation status and finally, on March 5, 2011, my son Spencer John, arrived into the world. Due to some complications from delivery, Spencer and I stayed in the hospital for a week following his arrival. We quickly fell into a routine of wake, eat, sleep, and once home, I noticed Spencer slept A LOT for a baby, and had difficulty with feedings. Being a new mom, I still wasn’t sure what was normal and what wasn’t. But in my gut, I had a hard time shaking the feeling that something was wrong with Spencer. That was my first clue.  On April 29th, 2011, I noticed Spencer appeared to be having a hard time breathing and his lungs sounded wet—like he was battling his first cold. Second clue. When I went to give him a bath, he appeared pale, almost grey, and I knew immediately something was very wrong. I called my husband who was working, and he met me at the doctor’s office. I watched Spencer’s pediatrician as he listened intently to Spencer’s heart with his stethoscope. By the third time he put the stethoscope to Spencer’s chest, I knew. After a few x-rays and an ultrasound, in a calm but firm manner, our ped said “Something is very wrong. I don’t want you to go to Starbucks, I don’t want you to stop for lunch. Promise me that you’ll just drive straight to Seattle Children’s right away.” And with that we left his office in Renton and arrived to SC in about 25 min—miraculously! A cardiac team met us in the ER and led us to a room.  The events that followed are a blur, but once Spencer was hooked to an IV line and more tests run, a pediatric cardiologist stated that Spencer had a very rare, congenital heart defect called Shone’s Complex, which is a series of four, primarily left sided defects. He told us that Spencer had a coarctation of the aorta, parachute mitral valve and abnormal lesions in the lower left chamber. We discussed the possibility of a heart transplant. At just 7 weeks old, Spencer was admitted to cardiac ICU while the team formed a plan. Thankfully, after a few more tests and a few days on nothing but TPN, the decision to perform a coarc repair first, we avoided further transplant discussions. On May 2nd, 2011, Spencer underwent his first open heart surgery. The coarc repair was done with a significantly good outcome. I was shocked to see how greatly Spencer’s color was improved. We were discharged from the hospital 12 days after his surgery with a cautious optimism from his cardiac team, and very close monitoring. The year that followed was filled with a few heart catheterizations, NG tube and total immersion into unknown territory as “heart parents.”  Like any parent whose child is dealt a serious medical issue, the months after diagnosis were some of the most difficult of my life. Spencer kept failing swallow studies and was not gaining weight or reaching the milestones that were expected. He was nearly 18 months old before he learned to walk. When he was finally walking, he wore braces on both feet to help the bones in his feet develop properly. His physical strength was poor (for obvious reasons!) and so we started to see an occupational therapist twice weekly. It was many hours in the car and hospital and if you know Seattle traffic, you know the added stress!  I look back on that season now as just that---a season. It was long and difficult and there were many, many days that I’d cry out of sheer exhaustion. It took its toll on my health, my marriage and influenced almost every area of our lives. The fear of the unknown was (and sometimes still is) one of the things that held me in its tight grasp. I kept journaling, praying and processing to cope with this new life of
mine as not only a parent, but a parent to a child with a serious medical diagnosis. I kept hope alive by writing down goals and plans and refusing to believe that this diagnosis would limit him (or us as parents) to anything less than an adventurous, full life.  Fast forward to today. Spencer is a healthy, medically-stable 6-year-old. He’s learning to ski at Mission Ridge, has traveled internationally and enjoys all things trains and planes. He has a healthy worldview and frequently verbalizes his plans to live in London, England when he’s an adult. Depending on when you ask him, he’ll tell you he aspires to be a train engineer, doctor, teacher or Olympic swimmer.  He enjoys his twice-yearly cardiology visits and understands that discussions around valve measurements, pressures and gradients are normal. He is aware of his physical limitations, but he doesn’t let that stop him from being outside and exploring the world around him. I think he makes it better. He’s certainly made my world better. I don’t know what the future holds as far as more medical interventions for Spencer. There have been setbacks and I know there will be more. I know that further surgical intervention will be a realization soon enough. But more than anything, I’m thankful for where we’ve been, where we’re going, and the lessons learned along the way.  For me, now as a full-time employee of the American Heart Association, there is a slogan that is widely used that you may have seen in some of our marketing and branding which reads “Life Is Why.” For many of us within the organization, it is much more than just a tagline—it is our purpose. There is still so far to go within the realms of advocacy, research and medical advancement in treating congenital heart disease, as 1 in 110 children are affected by CHD.  This month, I want to encourage all the Brave Warriors, their families, advocates and friends, to lean in to your purpose. It can be much greater than you’ll realize in the moments of pain and difficulty. The stories are still being written, and we have a choice to write them well. Love the moments--no matter how big or small! -- but most importantly, love those who walk beside you on this journey.  With heart, Anna Anderson  
 
To learn more about congenital heart defects and read about Spencer’s diagnosis, see links below:  http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/Congenital-HeartDefects_UCM_001090_SubHomePage.jsp  http://www.chdbabies.com/2009/08/brief-overview-of-shones-syndrome.html  http