We just want to say thank you all those who helped us through this heart stuff with Jake. The following is just an attempt to do so but it's also our goal that maybe we can help others through these experiences so I have included a little part of our story.
Through a tiny ellipse of tissue called the sinoatrial node (situated in the back wall of the top of the heart’s right atrium), a set of signals originates to ensure each of our heart muscles operates as they should. The heart as designed is the world’s best engineered and most efficient pump as these muscles operate every second of every day and at least 2.5 billion consecutive times during a normal lifespan. This operation ensures that blood is transported through the human body in a continuous circle. This is how the heart should work. However, on February 14, 2007 (ironically the day recognized as National Congenital Heart Awareness Day) we were reminded that at times this continuous circle is damaged as our 14 day old son Jake was diagnosed with an Ostium Primum Atrial Septal Defect (ASD). Basically, this defect consists of a hole between the 2 atrium (upper collecting chambers of the heart) with a defect in one of the heart valves. The only solution to ensure a full lifespan and prevent more complicated cardiovascular problems is repair by open heart surgery. This just so happened to be the same defect I was diagnosed with and had repaired 11 years earlier. Only now I would be bringing along my wife of 5 years, Amy, and our first child into this story. They both have proved to be great warriors in this story and battle against Congenital Heart Disease (CHD). We soon found out that the story is not always as expected as Jake’s hole was almost half an inch in diameter (much bigger than mine) and would very quickly begin to create more complicated problems if not corrected within the first year of life.
As my family can attest and as the first word of the defect suggests, going through an atrial septal defect and open heart surgery is a trial. However, it’s a trial that has been conquered with the prayers and support from Church families literally around the country. We have been so blessed! Even though we may take our prayers casually at times, this experience has reinforced to us something we need to be reminded of every so often. It’s that every prayer, no matter how small, gives others life and hope. We are so thankful to each you who took the time to raise Jake up in prayer to God. We couldn’t have done it without the prayers. The following are just a few of the highlights in Jake’s recovery, and they were only possible with God’s help and through many answered prayers.
We immediately noticed that Jake no longer sweats like he has just run a marathon when feeding. An x-ray taken just three days post operation already showed new capillaries forming in the lungs indicating increased cardiovascular ability and that Jake’s heart was operating as a more efficient pump. Four days post operation with a split sternum, cut in half chest muscles, and back muscles that were just compressed way more than they were designed to be, Jake pulled himself up in his crib. Five days post operation, Jake was not only crawling again but climbing our stairs. He learned to modify his crawl by turning it into a bear type crawl with his elbows locked to put less stress on his chest. I don’t know if that’s just another one the body’s amazing ways of resilience or if he’s really that smart. As parents we are choosing to believe that’s it more of the latter. It’s hard to believe that someone who hasn’t said his first word or taken his first step could already make his Mom and Dad so proud, but Jake has done just that by showing he’s a true fighter.
Nationally, CHD’s continue to be the most common birth defect and are the number one cause of death from birth related defects during the first year of life. Technology has brought us to a point where specifically, ASD’s that are corrected can lead to an excellent quality of life with only a likelihood of re-operation to repair or replace the mitral valve many years later. As we have learned from others, CHD’s are not something that can be fully cured, but they can be managed. It’s said that the goal of any CHD survivor is to live a life long enough to die of something other than their heart defect. Many stories dealing with CHD’s do not have the same type of ending that ours has had so far. During our stay in ICU we were witness to a young mother who had a 10 month old girl who experienced serious complications during a procedure. Things did not go well and later that hour Amy and I shared the elevator with the hospital chaplain carrying her white Christening gown up to the family in ICU. How do you even begin to explain pain like that? I have no idea, but I’m continuing to learn that it’s not our job to explain all of God’s Ways and that we are not in control of life the way we like to think sometimes. To those of us in life who feel a need or sometimes duty to try and explain why things work the way they do, the above thought should be freeing. After all, God has shown that he loves to work within horrendous circumstances at times for good. Sometimes He even allows us the hindsight to see that His hand controlled the circumstance all along. However, what we do know without a doubt is that God wants to use our scars in some way to help others. Jake and I are looking forward to God showing us many ways to help others with our story in the coming years. Taking the words from one of our favorite songs (Caedmon’s Call, “Lead of Love”),
“the journey’s left its share of scars
“Looking back You know You had to bring me through
All that I was so afraid of
Though I questioned the sky, now I see why Had to walk the rocks to see the mountain view”
Everyone has holes in their heart along with numerous scars which lead us to different paths in life. It’s just that God has chosen and blessed (yes, I do mean blessed) Jake and I to have similar paths in heart defects and open heart surgery. Just by virtue of being born we all have a hole in our heart, and we obtain many more through our experiences in life. That’s where God comes in and fills all those holes with different types of patches. For those of us who have our holes filled and patched with Christ, we await the day that our hearts will be fully and perfectly restored to the natural form that God has promised. As joyful as we are that Jake’s day of surgery is over, we truly can’t wait for that Day. Until then, we all have to remember that we are playing small parts in God’s larger story. We should all look forward to coming into better understandings of how God wants to use our experiences and stories. If anyone happens to be drawn to any of these stories and not really know why, humbly propose that the story is only a vehicle to proclaim a story greater than our own. On that note, if anyone else ever happens to be in a similar medical/health experience or know of someone who is Amy or myself would be blessed to be able to help in any way possible. It’s definitely been and continues to be one of the primary stories of our life.
Ty, Amy, and Jake McCathran
