Saving Little Hearts

Hi, my name is Amanda Schaefer, and this is the story of my son, Wyatt. Our family consists of Jeff, myself, Megan-heart healthy (19), Ashley-heart healthy (15), and Wyatt-TAPVR & ASD (14)

Wyatt was born on June 15, 1992, after being almost 3 weeks late. (I went into early labor with him in May, but they were able to stop it) He weighed 8 lbs and 10 oz. I was sure something was wrong with him, but I couldn’t get any answers. I had a lot of health issues, and they said I needed to stay calm. Wyatt was born around 2:00 p.m., but by 6:00 p.m., we still didn’t get to hold him or anything. Finally, my husband went to talk with them and explained how much this was upsetting me, so we were able to hold him, but only for a short amount of time. They assured me he was fine. We found out later that his apgar score was 9 the first time, but 5 the second. I understand now that isn’t a good sign. I dreamed 2 weeks before I had him that all of this happened, so I was a little jumpy about things. Anyway, they sent us home on Wednesday. We live in a very rural community, and the hospital care isn’t much for a situation like this. I took him back to the doctor several times between Wednesday and Friday. He was yellow, but they said it was only a small case of jaundice. The girls had that too, but they didn’t look like this. His eyes were swollen and he was clammy. They assured me that it was just a newborn eye infection and gave us some ointment to use. They said he was clammy because it was mid-June. My husband wasn’t able to see much of this, because he was at a job that he had to work long hours. Sunday was his only day off. When he did see him, he was sleeping, and thought well he looks ok to me. After spending the day with him on Sunday (Father’s Day), he saw what I was talking about, and we decided we would take him to the doctor on Monday and demand that they do some testing to figure out what is going on. I had a bad feeling all day, and I couldn’t shake it. I could not get Wyatt to take a bottle all day. That’s not good! So I woke him up about 10:30 that night, with the intentions of trying one more time, but when I did, he quit breathing. By now, I’m hysterical. My husband and I drove him to the local hospital with me holding him. He quit breathing several times during the 10-minute drive. I would just shake him, and that would startle him enough to gasp for air. When we got him in the ER, the pulsometer reading was only 42%, and he was starting to turn blue. The staff finally called for a helicopter from Columbia, MO. When the staff landed, they took us out to a waiting area, where we waited for 3 hours, with no one telling us anything. We kept seeing people hurry out of ER and go to the nurse’s station and back, but they wouldn’t tell us anything. Finally one of the people from Staff for Life came to talk to us, and said it would probably be fatal. They asked us to sign waivers for them to treat him without us, because there wasn’t room. They had a lot of equipment to try to save him, so we did that, went home to arrange for longer term care of our girls, pack a few things and rush to Columbia. We arrived about 4:00 a.m. The Columbia staff by now had figured out that it was a heart problem, but didn’t know what. So more testing…. Finally about 12:00, the staff from Children’s hospital in St. Louis arrived with their helicopter and equipment. We went through the same thing all over again, with sign here, etc. Then we drove 3 hours to St. Louis. We were ushered into a room with about 20-30 doctors firing questions at us. Then we got to go see Wyatt. He was in ICU, with a heart/lung machine hooked to him (ECMO). It was very difficult to see him like that. I still have a lot of guilt because it was so hard for me to see him that way. The doctors explained that he needed to be on this machine to get him strong enough to have surgery. Without the surgery he would die. With the surgery he might anyway. It was all very overwhelming. They explained what TAPVR is, and what to expect, etc. The next morning, at 8:00, he went to surgery. After 8 hours, we were told that everything was going well, and they would be closing soon. They gave us instructions on going to the recovery area in ICU, etc. The next thing you know, they ushered us into a private room, and brought the clergy in and explained that they were losing him on the operating table. They hurried to finish his ASD patch, and get him stabilized. We found out later (about 3 months old) that the patch didn’t work, and so they did another catheritization and determined that he needed another one. This one was man-made and would grow with him. After his first surgery, he was in the hospital for about 2 weeks. Then he got to go home, and I remember how scary that was. What if I can’t care for him, or something goes wrong. St. Louis is so far away in a situation like that. Somehow we made it though. Wyatt had a lot of complications from the lack of oxygen, etc., but he’s ok now. His immune system was really messed up for about 2 years. He had whooping cough (pertusis), pneumonia, double pneumonia, rsv, etc. He is now 14 years old, and is a very normal kid. He is very active in sports, etc. He plays football, baseball, and runs track. He has to go to the cardiologist every 5 years for the rest of his life, but so far the visits have been great. He has no restrictions, and is doing well at school. Most people couldn’t tell there was a problem, unless they get close enough to see the scar on his neck or chest.

Thanks for your time, and thanks for what you do!

Sincerely,

Amanda Schaefer