A Ticking Timebomb
The story of Aaron's open-heart surgery
My wife, Amy, wrote an eBook that goes into much more detail about this true story. It is available at a very low cost to download at your leisure. The book covers many more blessings and answered prayers than I could have included in this article. You can view it here: Lulu.com
There are some things in life that you can never really be prepared for. When your child’s life is in danger, and what he or she needs is not something you can provide, that is a different brand of helplessness. My wife and I experienced this on a couple of occasions with our children.
In this post, I will share the story around our son’s open-heart surgery when he was only 3 days old. Aaron’s story is far from over as he is now a young adult. But there was truly a time when I feared our time with him would be short.
Before I begin, I want to acknowledge the parents and children whose stories did not turn out the same. I cannot imagine the pain and suffering your family has been through. There are no words I can say to fully express how sorry I am that you have experienced such a horrible event.
I do believe that God spared Aaron and worked through his surgeon to heal his body. However, there is nothing about Aaron or our family that would have warranted this. I wish I could explain why God chose to allow Aaron’s healing and allowed others not to recover, but I cannot. The best I can do is encourage Aaron to live a life that is worthy of the gift he was given.
Chicken fingers and lots of confusion
We were so blessed to have an amazing practice of pediatricians for our children when they were young. We had our favorite doctor in the practice, but be sure there were some we didn’t care for as much. This was mostly just for personality reasons.
Amy had also found the best doctor for her OB-GYN needs. He was informative and funny. We had absolute trust in whatever he had to say about her pregnancies.
We once again found ourselves in the Labor and Delivery department of Jackson Hospital in Montgomery, Alabama. This was our 4th (and supposedly last) child, and Amy’s last pregnancy. My mom’s dream had been fulfilled, and just a couple of days ago, we placed her grandchild in her arms for the first time.
As usual, dad was getting bored of sitting in a sterile hospital room and needed to get out and walk for a bit. So, I traveled down the hall and a few floors to the cafeteria to see what was on the menu. I lucked out and found some chicken tenders and fries.
I did not want to leave Amy in the room alone for long, so I boxed up my lunch and made my way upstairs. As I entered the door, I found my wife talking with two doctors with a very concerned look on her face. I set my box down and tried to merge into the conversation.
Most concerning at this moment, was the fact that there was a doctor speaking to my wife that I did not recognize. He was a cardiologist. Hours after the birth of your child is not the time you want to receive a visit from the heart doctor.
The doctors agreed that Aaron had a rare birth defect called Transposition of the Great Arteries (TGA). This defect required immediate surgery. Our previous two births had been pretty commonplace, but we were about to experience an emotional roller coaster this time around.
The diagnosis
If you recall, there were doctors in our pediatric practice that we liked more than others. It is interesting that the doctor who discovered this defect was one of the ones we cared for least. He had a “feeling” that something was off after reviewing some labs and pushed for some additional imaging.
The OB-GYN stressed the importance of not getting Amy worked up at this point in her recovery over nothing. The pediatrician held his ground and pushed for the extra due diligence. They confirmed that we were dealing with TGA.
With TGA, the heart and lungs are wired incorrectly. This causes the body to be starved of oxygen-rich blood which can lead to blue skin, a weak pulse, or rapid heartbeat. Many times, the defect is not discovered until a child dies from complications.
TGA is rare. It affects about 1 out of every 3,413 live births in the U.S. Ari Cedars, director of the Adult Congenital Heart Disease Center at the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center, discusses TGA's symptoms, treatments and more.
We were told that there were only two doctors in the United States at this time who were qualified to perform the surgery. Thankfully, one of them had just recently moved to Birmingham, Alabama. This was about an hour and some change from Jackson, so the hospital arranged for transportation.
If you download the PDF and read the more complete story, you will see that between this diagnosis and the actual surgery, there are pages worth of stories. Friends supported us while we were walking through a fog. The company I worked for bent over backwards to ensure I was focused on nothing other than my family.
We arrived at UAB shortly after Aaron was delivered by the amazing crew of neonatal doctors on his special ambulance. It took a while to locate parking and find the right entrance to the part of the hospital where we needed to meet the medical staff. As we arrived at the floor of hospital where Aaron was, we saw a sea of white coats.
UAB is a teaching hospital. When you or your child has a rare defect, it is potentially a once-in-a-lifetime learning experience for young medicine students. These young doctors were wide-eyed and excited to see something so unique.
The staff took us to a little conference room where they went into great detail about the heart defect and the procedure that needed to be performed on our son. Everyone was gentle and kind. My head was swimming, but Amy was locked in and I know she understood way more than I did at the time.
We eventually were found a room in the hospital to get some rest, and we climbed up into an empty hospital bed together. We could not sleep. Amy needed rest badly. Her doctor had released her earlier than he would have otherwise because he knew there was no keeping this momma from her baby.
A question more important than life or death
Aaron was born on a Friday. We learned of his heart defect on Saturday. We had now arrived at UAB hospital and Sunday was when the medical team, including the heart surgeon, made their plans for the 6 hour surgery.
Dr. Knott-Craig was the surgeon. He was a very unique doctor with specific instructions for his team. Every aspect of the environment, and every interaction with the patient, was done intentionally.
We could tell from the things we heard about this surgeon, that he was confident and capable of repairing Aaron’s heart. Keep in mind that the circumference of his chest was only about 12 inches at this time. His heart was around the size of a walnut.
One of the things that he told us was that your chest
may have to be left open, I didn’t expect that and it scared me.
During the surgery they would take your heart out and
rebuild it and in the end it may not be the same size and
shape that it was before. If it didn’t fit then they would have to
leave your chest open for 24-48 hours until they could get it
to close all the way.
Sunday evening, we eventually left the hospital once visiting hours were over. We had located a little Motel 6 nearby that was to be our home away from home for the next few days. There was very little sleep that night, but a lot of deep conversation.
We spent much of the night thinking about the future. Amy and I cuddled together in that motel bed and prayed for our son. Then I asked one of the most important questions I have ever asked since the day we said our vows.
“What if God chooses not to heal Aaron? Do we still believe He is real? Can we ever forgive Him for allowing our son to die on an operating room table?”
For two young Christian parents, this is where faith becomes more than a word. Most often when we speak of faith, it is all theory and assumptions. That night, our faith was tested and we were forced to decide if all that talk was truly something we would live by.
You might think that we encouraged one another and ultimately declared that we would be committed and trust God regardless of His will. That would have been a pretty way to tie up that night. The reality was that we both admitted we wanted more than anything to trust God, but we would never truly know how we would react until presented with the unthinkable.
I like to think that, like Job, God could allow Satan to take every good thing away from me and I would still be faithful. Would I remain committed even if God allowed everything I cared about to be stripped away before giving Satan authority to affect my physical health?
We never truly know ourselves until we are presented with a situation that is completely outside of our control. When all there is to do is trust, can we be faithful? If we are not exercising our faith daily, how can we expect it to carry us through when we need it most?
Today
The surgery was a total success, and Aaron is now 17 years old. To look at him now, you would never suspect he had any challenges at birth. The scars still remain down his sternum and at various points around his chest and sides where drain tubes were once present.
The scars are faint, but I have to imagine that every time he looks in the mirror, he gets a stark reminder that his life could have been very different. Amazingly, the follow-up visits to the cardiologist have been positive. Aaron was not allowed to participate in sports for a short time, but he has no restrictions at this point.
In almost every case, there are leaks and stretching which potentially require fixing through surgery down the road. His repair is still solid. Aaron competes in martial arts tournaments and does tricking on a regular basis.
He spars against competitors and takes hits to the chest. My son is very tough, but when I see him take a hit, I remember that tiny little chest covered with stitches. His momma would hold him so tight as she thanked God for her little miracle.
I will share this story with Aaron as another reminder of his past. He has heard his story a number of times, but we have forgotten many of the little blessings and answered prayers that meant so much at the time. We were concerned and had so much fighting for our attention between Aaron’s health, information from doctors, and assistance from friends and family.
It is so easy to forget as time moves on. Gratefulness can easily fade into forgetfulness if we allow it. As we enter the Thanksgiving season, let this story be a reminder to be thankful for all of your answered prayers and so many little blessings along the way.
Maybe your story turned out differently. We have friends who lost children, so we know that the ending is not always happy. Perhaps you don’t know how you feel about a God who chose not to answer your prayers in the way you hoped.
You might know exactly how you feel about God, and you might tell Him often. My advice to you is to just keep on telling Him. Yell, scream, and empty out your heart as long as you keep talking to Him.
He’s a big God. The Lord can handle your disappointment and anger. He made you, so no one truly knows how you feel more than He does.
Experiences like these put our faith to the test. If you have all the answers and no reason to trust Him, you cannot call that faith. I would love to hear your stories where your faith has been tested.
I invite you to share your stories in the comments. If your faith was grown through a challenge, share it. But I also want to hear from those who might have lost their faith through some experience in life. I look forward to learning from you all.
