“Tyson’s Story” – as told by his Mom, Gina
Tyson was born May 11, 2008. We were unaware that Tyson was born with a Congenital Heart Defect (CHD). I had high-risk pre-natal care and a fetal echocardiogram because Tyson’s older brother was born with a CHD named Tetralogy of Fallot. We were told that Tyson’s heart was fine and we were really thankful.
At four months of age Tyson stopped wanted to take his bottles and had developed a strange cough. My husband and I would work tirelessly to try and get him to take a bottle using lots of toy distraction, it would take hours to get him to drink a bottle. Tyson would also be hospitalized every couple weeks for “croup” or “bronchiolitis.” However, these illnesses would never follow a viral process or have any symptoms other than a very croupy cough with strydor.
At six months of age, we were referred for an upper GI to see if Tyson had reflux, in case that is why he wasn’t eating. The radiologist looking at the upper GI told us on her way out of the room that Tyson did not have reflux but that he did have a CHD and would need heart surgery, she could see a vessel compressing his esophagus. My husband and I sat down in the waiting room of the Radiology Department and I sobbed uncontrollably. How was this happening? Could it be true?? What heart defect did he have?? How could we go through this again?
Tyson had an angio CT scan and was diagnosed with a complete vascular ring. He had a thoracotamy at six months of age where they divided his ligamentum arteriosum to give his esophagus and trachea more room. We continued for a year after this surgery nebulizing Tyson about 6 times a day. He continued to have terrible breathing problems. We were hospitalized 13 times that year after for croup, pneumonia, bronchiolitis. His breathing sounded like a cat purring and you could feel the rattle in his chest. Tyson had also gone from the 90% percentile in weight to the 3% because he had no interest in eating and his only calories came from 4-6 bottles of pediasure that he would drink a day.
At 18 months, I found a heart surgeon that specialized in vascular rings, Dr. Carl Backer of Ann and Robert Lurie Children’s Hospital in Chicago. I had nothing to lose, my child was failing to thrive and we couldn’t figure out why. I sent him an e-mail explaining the last 18 months of symptoms and testing. I sent him Tyson’s angio CT. Dr. Backer called me at work after receiving the images and told me that my child needed a MAJOR heart surgery. Tyson had one of the rarest vascular rings consisting of a right aortic arch with mirror image branching, a left-sided ligamentum arteriosum, and a circumflex aorta. Tyson needed an aortic uncross, which meant moving the aorta from behind the trachea/esophagus to in front where it should be. Within weeks we were in Chicago for the aortic uncross. After surgery, Tyson has had no further breathing issues and is in the 50% percentile for weight. We are so very grateful for Dr. Backer for saving Tyson’s life; prior to surgery Tyson’s airway was compressed by 70% and the opening to one of his lungs was only millimeters.
We celebrated Tyson’s 6th birthday this year with a cake by “Cakes from Grace”. Thank you so much Becky for making his monster truck cake. It brought tears of joy to my eyes to see my heart warrior feel so special!!!!
Cakes From Grace 