After a straightforward and uneventful pregnancy, our son was born in December of 2015. He had some difficulty breathing, so he spent the night being monitored in the NICU. After being released from their care, his regular pediatrician stopped by to do a routine check. He noticed what he thought was likely to be a “nothing to stress about heart murmur.” It was recommended that we get an ultrasound of his heart done to be on the safe side.
THE DIAGNOSIS
Later that day, one of the nurses mentioned that the cardiologist wanted to see us. That is the moment my stomach dropped; I knew they wouldn’t be trying to find us to say everything was normal. He explained that our son had a congenital heart defect called Tetralogy of Fallot. He drew us pictures and continued with medical terms that were buzzing in my head. All I could think about was how could this be? I did everything possible to make sure my baby would be born healthy. Here he was, only three days old, we had just finally decided on a name, and now we heard such devastating news.
Tetralogy of Fallot is a combination of four defects that result in an inadequate flow of blood to the lungs for oxygenation. It is named after the French physician, Étienne-Louis Arthur Fallot. In 1888, he described in detail the combination of the four defects that caused “blue baby syndrome.”
The cardiologist told us about the necessary surgery (and possibly surgeries) that our son would need when he was 4 to 6 months old... We were informed of the “tet spells” that we needed to watch out for and what to do if one occurred. Mentioning that Olympic Snowboarder Shaun White also has this condition brought a bit of comfort.
WAITING FOR SURGERY
We knew that surgery was inevitable but processing that information was difficult. Every day leading up to it just felt like a countdown. As each day passed, I was thankful that no emergency surgery was needed that day, but I was also acutely aware that we were one step closer to scheduled surgery. We were told, “don’t let him get worked up and try very hard not to let him get sick.” It felt like an impossible challenge. Imagine being sent home with a newborn with instructions not to let him cry or get sick. Germs are everywhere, and I tried my hardest not to allow them to infiltrate my little child. We went on house arrest during the time leading up to his surgery. Our daughter was four at the time; we had to pull her out of preschool and dance to help limit her contact with anyone sick. We rarely left the house, except for the scheduled doctor appointments. It was a very tough and isolating experience.
PREPARING FOR SURGERY
We were given the surgery date, Friday, May 6th. Most people are writing down their hair appointment, and I was supposed to write “Open Heart Surgery” on my calendar? I searched the house for a heart sticker and used that instead.
There is nothing that will prepare you for your child’s major surgery. We arrived on our scheduled day only to face lots of delays due to our surgeon and his team dealing with an emergency. Eventually, we decided that it was in everyone’s best interest that we reschedule. So, we packed up and headed home for the weekend with plans to return on Monday. Adding to our stress, we ended up in bumper to bumper rush hour traffic that made our less than an hour and a half trip take over three hours. We had a very angry baby who had a stressful day full of fasting which made things utterly miserable. We went home for the weekend, not sure what to do with ourselves, but I was able to spend Mother’s Day at home, with both kids.
All the emotions returned as we made our way back into the hospital on Monday, May 9th. In all honesty, most of that morning is a blur. He was first on the list, so things went quickly that morning. We were ushered back into a large room with tons of children getting ready for various surgeries. The nurses made small talk, trying to keep up comfort. They had us wipe him down with an antiseptic and put him in a little gown — the whole time I just wanted to scoop him up and run out of there. I really cannot put into words what it is like to hand your precious baby over to a group of strangers, with so much uncertainty of what the rest of the day will bring.
AN ENDLESS WAIT
We were sent to the waiting room, not quite large enough for all the families that need to use it. Across the room is a large monitor that informs you of what stage your child is in during surgery - anesthesia, pre-op, surgery, etc. They told us that the surgeon would come to find us once things were done. And then we waited, trying to remember to breathe, staring at the other families and eavesdropping on their conversations, watching the board that now said “surgery in process,” fumbling with my phone, watching other families leaving to see their child, wondering when we’d get an update, trying not to panic, definitely trying not to focus on the fact that my precious child is hooked up to a bypass machine, and his little heart has been basically unplugged from his body.
Finally, our surgeon arrives and he is smiling. At that point, my own heart felt like it would burst. The surgeon spoke quickly, he is happy, things went well. Overall, it went much quicker than they had estimated–about three and a half hours from start to finish. Our sweet boy’s lung valve was too narrow, so he received a patch to help expand it rather than having it stretched.
REUNITED WITH OUR SON
Just like there is not anything that will prepare you for surgery, there is nothing that will prepare you for seeing your child right after surgery. He was completely sedated and still using a breathing tube with wires, and tubes connecting him to the monitors.
GRATITUDE
Our surgeon is without a doubt a hero in our story. By stopping our son’s heart, he restarted our lives. And because of that, we are forever grateful for him. While it doesn’t seem like things ever go just right for us, his recovery went as perfect as can be. He moved right along in the process and amazed the doctors and nurses. We were discharged just four days after open heart surgery. If that isn’t the definition of a Warrior, then I don’t know what is.
At only three years old, Waylon has already faced more obstacles than most adults. He has a condition that will be with him for life, but my goal is to try to allow him to set his own limitations. Of course, as a mother, I would prefer to put him in bubble wrap and keep him safe. He is continually testing the world around him and in doing so, is quickly adding to my collection of grey hair.
Only time will tell what the future holds for our son. We have been told to expect another surgery when he outgrows the patch placed on his lung valve. It is something I try not to dwell on and instead I stay focused on the present. We now know there is a light at the end of the tunnel and our little heart warrior has guided the way.
Kara Fanning lives in Gonzales with her husband Marc and son, Waylon and daughter, Autry. Kara graduated from Fresno State with a Bachelors Degree in Animal Science and is a stay at home mother. Kara hopes to someday start a non-profit to help other families affected by congenital heart defects. To read more about Waylon’s journey, please visit the family’s Facebook page at TheWarrior_Way.