(Jason 16, Rebecca 14, Hailey 2, & James 4 months.)

Hello, my name is Cathy and I am married to Steve and we have 4 wonderful children. Jason-born 6-27-84, Rebecca-born 8-25-86, Hailey-born 5-13-98, and James-born 4-4-00. Jason was born with a rare congenital heart defect and the others are heart healthy. My pregnancy with Jason was normal and I was in labor for only 2 hours. He was 8 lbs.1 oz. and scored well on his apgar. It wasn't until the next day when he was being circumsized that the doctors heard a murmur. A team of specialists were brought in and he was diagnosed with Tricuspid Atresia ASD,VSD. He was very blue and was put into ICU. We were told that it was very rare and he would eventually need many surgeries. I will never forget that day....we were devastated. How could this happen? Jason came home after 3 days in ICU for monitoring. We were told to return every 3 weeks for echoes and other testing. I don't think we slept at all. I was always checking him to see if he was breathing. The doctors said not to let him cry very long and so he spent a lot of time being held. I tried to breast feed but he would tire easily and so he was switched to the bottle. He didn't eat too much, slept all the time, wasn't growing very well, and he was very blue. At age 17 months he had his first surgery. The doctors were amazed that he was able to wait until that age. They thought that it would have been sooner. Jason was a very strong willed baby that always proved the doctors wrong! He had a BT shunt put in since the ASD was closing. This was a temporary procedure since the doctors didn't feel he could handle open heart surgery quite yet. The surgery went well and I will never forget how pink he was in recovery! I never realized how blue he had been until that moment. I started crying out of joy for my little baby who was now pink!! We spent 3 weeks in the hospital and came home 3 days before Christmas. What a present that was! After that surgery Jason's eating improved, he was growing well, and the blueness was gone. He progressed better than the doctors had thought. We were told that he would need open heart around age 3. Well Jason proved them wrong again...he waited until almost age 5!!

We knew it was time for surgery again around age 4 1/2. He would get out of breathe, tire easily, and he was turning blue again. We were so scared since this was a big surgery. He had the Fontan procedure done and again I saw a pink little boy in recovery! Even though he was hooked up to so many machines, all I really noticed was his pinkness. He had a difficult time getting the anesthesia out of his lungs so they gave him bubbles to blow in his oxygen tent. He really liked that!! Even though he was in a lot of pain....he kept a great sense of humor. He was always wearing his funny nose glasses and his hats!

(May 1989 Jason's 2nd Surgery)

The nurses were amazed at how he handled everything...he actually made it easier for all of us! He never once complained...not even when his lungs filled with fluids and they had to put an emergency chest tube in. He was a very courageous little boy who made us laugh even when he hurt so much. After 2 months in the hospital we finally got to go home!! Jason went home on Lanoxin, Lasix, and potassium. The doctors said that he would be on Lanoxin the rest of his life...but Jason proved them wrong again! Six months later he was off the Lanoxin and 3 years later he was taken off the Lasix and potassium. He had no meds and was doing fine until age 12. He then started to tire easily, his coloring wasn't right, and had frequent migraines. The doctors put him back on Lanoxin and aspirin. Jason is now 16 and is always tired. His heart races a lot, it's hard for him to sleep, and he has many migraines. He is now going in the hospital to have an ablation done. This is where they go in with a catheter to close off any pathways that scar tissue has caused. Hopefully this will take care of his tachacardic arrythmia's and he will feel and function better. The doctors have said that he will have more open heart surgery. He will have the bi-directional Glenn, lateral tunnel, and have a pacemaker put in. We just don't know when it will be done. It's the not knowing that's hard on a teen. But I feel he handles it quite well most of the time. Don't get me wrong, he does have many times that he is angry and depressed! I can't imagine how he must feel. Jason has dealt with issues that most adults never will. He is my hero and my inspiration and I am sure that he will live a long life and prove the doctors wrong again!!

Cathy

Copyright (c) 2001-Cathy

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