Birth Date: March 1, 2018
Diagnosis: Tetralogy of Fallott & Pulmonary Hypertension
Theme: Construction Vehicles
Due Date: August 1, 2022
Clytnon was diagnosed in Utero with TOF/PA/MAPCAS. Clynton is our first child so we had no idea what to expect. We threw ourselves into research until the day he arrived. Clynton was born via emergency C-Section as his heart rate dropped due to the labor being too much for his body to handle. I saw my son briefly before he was whisked away to the NICU. My amazing nurse wheeled me still in the hospital bed so I could briefly hold my son before he and my husband were transported to the Children's hospital.
Clynton was full of spunk and a champion eater. He defied many odds and we got to go home after 4 days. We returned to the hospital for Clynton's first surgery when he was 5 weeks old. He had a catherization where a few of his MAPCAS were closed off and a stent was placed. This was to give him time to grow before his first open heart surgery. At 6 months old, Clynton had his first Open heart surgery. It was a successful surgery, and proving again how amazing he was, we went home four days after his surgery,
He required a lot of recovery at home and would be hospitalized two more times that year due to RSV. Clynton had his second cath to close off additional MAPCAS when he was 11 months old. Clynton soon started developing a new symptom. We were told he was having breath holding spells. Clynton struggled to breathe when he cried. He would turn blue and at times pass out. He wouldn't start breathing again on his own, and on multiple occasions I had to start CPR. He had MRI yo determine the cause. We got a call a few weeks later that the right side of his heart was swollen and he needed a new medication. Clytnon's spells became more frequent until I asked for him to be seen. At this point he was barely eating for us and I had to preform CPR on my son twice within 72 hours.
Clynton had another cath. He was much sicker than they thought and he coded on the table. He was in the cardiac ICU, and connected to a ventilator that was breathing for him. At 15 months old, he was diagnosed with Pulmonary Hypertension and a new aggressive treatment of medication was started. Clynton started fighting the ventilator and was off in three days. He has never matched their statistics and we were home 1 week after he coded.
After being on oxygen while his new medication worked to heal his body, he had another cath at 18 months old to monitor his pulmonary pressures and close off additional MAPCAS. Clynton showed great improvement and was able to continue without his oxygen. He continued to show improvement until it was clear he needed a pulmonary valve placed 1 month before his 2nd birthday. His heart was still working too hard and the right sided heart failure had caused a collapse in his right lung.
Clynton's 2nd open heart surgery was successful and he continued to heal without complication for about 3 months. He again started having seizures. With medication adjustments, he had a fairly uneventful year. He had his next cath a few months after his 3rd birthday. It showed improvement. Clynton just turned 4 in March and he will be having another cath this summer. Clynton is thriving in ways we are blessed to see. We are humbled to claim him as our son and will continue to fight each day with us much ferocity as he has shown since his first day of life.
We wanted to thank you and everyone for the beautiful work you put in for him. He’s teaching his little brother about all the different vehicles on his quilt. His smile was so pure so see. I included a picture so you all can see the big smile the quilt put on his face.