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In the days after Brooks was born, he was the best baby. He slept a lot, ate great, and didn't fuss much at all. Our 3 year old Sadie adored her brother and asked to hold him every chance she got. We were sleep deprived, but finding our groove. Unfortunately, our perfect little world came to a screeching halt the day before Thanksgiving when Brooks was 4 weeks old and stopped breathing on a car ride to see family. Frantically trying everything while dad was on the phone with 9-1-1, mom started CPR. A few breaths 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, Brooks started that same scary cry. Alone this time, mom grabbed her phone and laid him on the floor in his room and started CPR. 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 to the children's hospital downtown.
In the ER, the doctors and nurses started a full work-up 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 next day, 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, scary moments, 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, 2019 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 Green 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. Sadie has been well cared for as she gets bounced around and has been amazingly flexible through it all. She 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 and will rest 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.