featuredheartstory

Abbie was on a great schedule and eating well. When she was three days old she was a little jaundice as were my other children. I always took the other kids in and was told that as long as they were eating, peeing, and pooping that it would fade. She was doing all of these things so I had no idea that this was the first sign that her liver was shutting down. The morning of her fifth day she was very fussy and uncomfortable. When I would feed her she was a little bit sweaty but I thought it was from my body heat or my own sweat because I had a fever. I left to take my son to school and when I arrived home my husband was knelling by the bed in tears telling me that there was something wrong with her. At this point I called the Doctor and made an appointment to bring her in first thing. She started to breath heavy as if to catch her breath as a baby does after crying. Thank God Jim was not back at work because I would have laid her down for a nap and she would have died.

We bundled her up to take her out in the cold air and headed for the Doctor’s office. When we arrived we filled out the paper work and she had calmed down and appeared to be sleeping. After arriving and getting her into the bright lights her skin was very Jaundice but I was still not that concerned because never in my worst dreams could I have imagined what was to come. We were called back to the room for her to be seen and as we started to take her layers off we all knew she was in trouble. The nurse immediately called the Dr. In to see her and headed off to call an ambulance. I stood there with this dying baby that just hours before was breast feeding and appeared to be quite healthy. I will never forget the emotion in that room. I can’t explain it, but anyone that has been that close to losing their child would definitely understand.

Help was on the way for our little girl. Dr. Horvath (who we thank for making the quick and right decisions) was asking us all types of questions about Abbie. I don’t think he could believe that she had ever appeared to be healthy. We arrived at Memorial Hospital only to experience the unthinkable. Our daughter was in congestive heart failure and no one knew it because she was so far gone that all they could to was warm her body and try to keep oxygen in her. They worked very hard on Abbie and we thank them because they brought her back enough to find out that Abbie’s heart was deformed. She had many things wrong with her heart. Her aortic arch did not form completely and blood could not flow through her body at all. Some of us would wonder how she survived for five days. Now, because of this I can tell you why, babies have this thing called a PDA that pumps blood through their bodies while they are in their mothers. Usually within twenty-four hours this closes and their hearts start to work like ours. That was another thing that was wrong with Abbie’s heart, her PDA was larger than normal so it took five days for it to close completely. This is also why no one detected her problem at the hospital. She also had a vary large hole in her heart along with the left side of her heart being smaller than normal.

She was put on life support and also given a medicine to open her PDA back up to keep her alive until she could get help else ware. Her organs had shut down and we had no idea if she had any brain function left. The only hope we had at that point was hearing the words that “she could survive”. From they the Air Angels came and picked her up by helicopter and took her to Riley Children’s Hospital. This is were we met our next set of Angels. She was one of the most critical babies there. We met some wonderful people there including Dr. Brown who was to be Abbie’s surgeon. He was very confident and reassured us that he would do everything he could to help our little girl. Abbie then had a fourteen hour open heart surgery that gave her a second chance at life. She is a very lively, happy girl today and has more energy and fight than anyone I have ever met.

I know from seeing a lot of babies there, that some heart defects are caught before birth. I also know from experience that more education and resources for Doctors, nurses and parents could help prevent some of the trauma that Abbie endured. There are many routine preventative procedures for babies, but some how detecting heart problems are not always one of them. Heart defects and Congenital heart disease kills many children each year. We have the resources to fix a lot of these children but like Abbie some of them go undiagnosed and they don’t get a chance to survive. Abbie has more problems with her kidney today than her heart due to the lack of knowing anything was wrong. A simple routine echocardiogram after she was born would have saved her body from all of the initial trauma.

Abbie is a living miracle today and I’m sure by looking at her no one would know, other than all of her scares, what she has gone through. As a family we still have fears everyday that something might go wrong with her. It is a feeling that I don’t expect to go away anytime soon. We worry about her getting sick and how a simple cold could turn into the unthinkable. These are fears that I am sure anyone with a child that has a heart condition would have. The fear is hard to explain but it is there everyday and especially every night before we tuck her in. With all of this I have to say that this experience in my life has shown me what love really is. I look at the world in a new way. There is fear but even more powerful than that there is meaning to life.

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