The Champ is Here
Though big sister Sadie was originally disappointed her new baby would be a brother, she was clearly super excited to welcome Brooks to the world. This birth was going to be much different than our first one. He decided not to come early so mom was scheduled for a c-section on October 24, 2018. Unlike big sister, everything went according to plan and he arrived with no drama. A happy, healthy, though unexpectedly small baby boy. After having a 9lb baby 3 years earlier, a 6lb 3oz baby was a little shocking. Aside from his size, all was well and we went home to start our new journey as a family of four.
In those early days, Brooks was the best baby. He slept a lot, ate great, and didn't fuss much at all. Sadie adored her brother and asked to hold him every chance she got. We were sleep deprived, but finding our groove. Life was going according to plan. Unfortunately, our perfect little world came to a screeching halt the day before Thanksgiving when Brooks was 4 weeks old. On a car ride to Frankfort, KY to see family, he started crying. We decided to pull over and quickly realized it was a very different cry. When mom went to pull him out of the car, he was barely breathing. Frantically trying everything while dad was on the phone with 9-1-1, his breathing kept slowing until it stopped. We eventually turned to God for help and realized he needed CPR. A few breaths from mom and compressions got him breathing again. The ambulance took us to the hospital for a full work-up and a short stay. Reflux was deemed the culprit and we were sent on our way.
A few days later, during a bath, mom removed the band-aid from his spinal tap, and Brooks started that same scary cry. Alone this time, mom grabbed her phone and laid him on the floor in his room as he slowly stopped breathing again. This time, the first breaths of CPR didn't work as quickly. The 9-1-1 operator walked through the steps, checking the airway, looking at the chest rising and falling. Nothing. Finally, after what seemed like an eternity, Brooks let out a weak cry. He was breathing. EMS arrived and brought us downtown to the children's hospital with the help of an extremely well-coordinated police escort.
In the ER, the doctors and nurses started a full work-up again. It all seemed very familiar, but scarier this time because it wasn't supposed to happen again. As they were poking and prodding, Brooks got so upset, he had another episode and his oxygen saturations dipped into the 30s. That behavior earned him some extra oxygen in the nose and a bed in the pediatric ICU.
The first night was uneventful and seemed as though we might go home without any answers. The next day, however, he had more serious breathing difficulties and the decision was made to intubate him. The next week and a half was full of lots of tests, prayers, tears, and finally a diagnosis. A scope of Brooks's airway revealed that he had a condition called bronchomalacia in the airway to his left lung. Basically, the airway is underdeveloped and floppy, closing off when he tries to breathe. The next day, he had surgery for a tracheostomy to allow more long-term ventilation. The pulmonologist predicted he would grow out of it in 2-6 years. We finally had a path forward and started the process of learning how to care for Brooks so that we could bring him home. He had g-tube surgery in early January and finally started gaining weight consistently.
Amidst the long nights in the hospital and our focus on getting home, we had all but forgotten about the genetic testing that was underway to try to understand why Brooks had malacia. On February 19th we were given a diagnosis we never could have expected. We were told he has SMARD1, a rare genetic disease with no current treatments. The temporary ventilator and g-tube suddenly became permanent. The weight of that day is indescribable. Like a bad dream that you hope to escape when you wake up. There is no escape.
Googling that night, we found the smardypants blog and dad reached out to connect. Annie and Nate graciously agreed to FaceTime the next day. We spent a short time on the phone, but we could tell pretty quickly that Nate is a truly remarkable guy. Though there are less than 100 known cases of this disease, we suddenly didn't feel so alone. We felt hopeful. Nate was happy, just like Brooks is happy. In fact, Brooks's doctors and nurses love him and his smile. We have had some really dark times in the last few months, but God has shown us so much of His love. We have been sent countless prayers, meals, gift cards, toys, clothes, and much more. Sadie is so loved by her friends, family, and even some strangers. She has been amazingly flexible and loves being Brooks's big sister.
Through the nonprofit smashSMARD, we are hopeful gene therapy will be a real treatment in the near future.
In the meantime, we are committed to bringing awareness to this rare disease. We are also committed to resting in God's love and grace. We will have peace and be joyful no matter our circumstances. It seems fitting that Muhammed Ali should inspire us since we live in his hometown. From the start of our hospital stay, we would always lift Brooks's arms and say "Brooks is the Champion!" We know he has great things in his future.
“Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”
- Muhammad Ali