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Alex’s Story

I would like to introduce you to my “Hero” , my son , Alex Morgan. Alex was born on December 3rd 2001. We knew at 7 months pregnant that Alex had a heart defect. We later found out it was Tetralogy of Fallot with pulmonary atresia. He also has a chromosome abnormality called DiGeorge syndrome which affects his immune system. What we didn’t know was that Alex would need to undergo several surgeries in the next 3 years of his life. He has had 7 surgeries so far, three of them heart surgeries. The doctors performed a tracheostomy when he was just a few weeks old, this is after he “coded” twice. He then was fully supported by a ventilator and that is how we took him home from the hospital……7 months later!

I will share one vivid memory with you. This was after Alex coded twice but before the tracheostomy. I had a heart to heart talk with Alex, non verbally, just my heart to his. I told Alex that if this was too much for him , he can go to God. I would understand. At this point Alex had so many tubes going in and out of him and had been through more than most adults could handle, it was almost unbearable.( I may end up in the crazy house…..but he would be OK with God ). But ….if he wanted to stay with me , I would fight with him every step of the way. Alex coded one more time after that and came back to me. He had more surgeries after that, and came back to me. I guess he wants to stay on this planet with me. What more can a mommy want? You see, my Alex , had he been born just 10 short years earlier, would not have survived . Alex has a gortex conduit , which is pulmonary artery. A porceine valve (pig valve) within that conduit, and homografts ( taken from cadavers) leading to each of his lungs. I was told that the open heart surgery that Alex had was once performed in a one step process, but the children were not surviving. Through research they have learned new techniques/procedures and the children are living longer now.

Alex just celebrated his 7th birthday! I was once told by a neonatologist that these children, pointing matter-of-factly to Alex, do not typically live past 1 year of age. Well… how sweet it is! Alex is now attending kindergarten. He and his little brother play AND fight like “normal” brothers do. He actually has two brothers, Jakob who is 9 and Collin who is 4. Alex sings and dances like crazy. We once were not sure if he would eat by mouth (he never was able to drink from a bottle and was completely G-tube fed for a long time and had an oral aversion to anything placed by his mouth), but guess what… he eats like a crazy man! We weren’t sure if he would ever talk (due to his trach and being on a ventilator for so long and the tracheal stenosis and malacia he had)… but guess what, he NEVER stops talking! He loves playing bowling on his Nintendo Wii. He loves the “Wiggles” and has been wiggling for the past 7 years, despite our effort to turn him on to other interests! We weren’t sure about a lot of things but Alex has amazed us every step of the way. He can ride a bike with training wheels. He is a normal little 7 year old, and trust me this is truly a miracle! Alex has many more open heart surgeries ahead of him. This is why research is so important. Alex has a team of doctors caring for all his needs. Children’s Memorial will always be in our lives. We are there frequently. But what we do without it? Let us be grateful for what we do have and not focus on what we don’t.

Written by Alex’s Mother

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