Evan, born 2004

My name is Lisa and I gave birth to a little boy with TGA. He was diagnosed in utero at 20 weeks so we were expecting craziness when he was born.

 

He was born on November 5, 2004 and was immediately taken from me and transported to Children's Hospital of Pittsburgh. He needed to visit the cath lab first to have a procedure to allow his blood to mix so his little body was able to receive some oxygen. He had a fever so his surgery was postponed until he was eleven days old.

 

On November 16th, we had to do the hardest thing ever and hand over our little angel to the doctors for heart surgery. I never thought I would ever be in a position like this ... these things aren't supposed to happen to me, only other people. We handed him over around noon and didn't get to see him again until around midnight.

 

He had some complications with bleeding that they had to get under control and he unexpectedly had to be placed on ECMO. His heart just wasn't strong enough to do the work on its own so he needed some support. That was the point where I almost passed out. Here is my tiny baby having his blood enter and exit his body via a machine. He was on ECMO for four days and finally was able to come off. From that point on, he made great progress in recovering. H e was finally able to come off all of his pain meds and the respirator and finally got moved to a regular room. He had a feeding tube and IV in case he needed further meds but this was nothing compared to the numerous machines that he was hooked up to.

 

We got to take our little boy home the day before Thanksgiving. He had a feeding tube and was on captopril for his blood pressure but it was nice to be taking him home! Needless to say that was the best Thanksgiving that anyone could ask for. He is now a happy baby boy and keeps us laughing constantly. You would never know to look at him that he was so critically sick. We are thanking for our little boy every day.

 

Story by Evan's mom, Lisa - Pennsylvania