Member Profiles
Debbie 1
Almost 15 yrs ago I went into the hospital for what was supposed to be a normal c-section delivery. It took a long time for me to awaken, and I was not prepared for what the day that would follow this joyous occasion. My son who was 7lbs14oz was blue and could not come off the oxygen. He could not breathe without it. They did xrays and other tests right away and discovered that his heart was on the right side.
Before I could completely grasp what was going on most of my family was at the hospital because Jeremy was going to be transfered to another hospital. I was a single mother at the time and was glad to have my family at this time. I wondered how this could happen and soon discovered that many children are born with a heart problem but was not ready for the fact that this was going to be a very rare problem. They did a cath and thought that he had transposition of the great arteries, pulimonary stenosis, holes in the heart, and a few other things in addition, including dextrocardia.
At five days old he had to have a BT shunt put in because he could not breathe on his own. He was lucky he was a fully term baby. This seems to be an advantage for him. He came home at one month old and struggled to gain weight over the next few months. At 10 months old they did another cath and discovered his pulmonary valve had opened up and he was now getting too much blood in his lungs. He was only 13 lbs at this time. He did not crawl or walk in his walker. After they shut off the shunt in the next 1-1/2 months before his 1st birthday he gained 8lbs, started crawling and walking in his walker. He was like a new child.
From there on no one would know once he started walking that he had a condition unless they noticed he was bluer than other children. At 2-1/2 yrs old they wanted to do his surgery but did another cath and now that he was bigger they diagnosed him different. They said that he had Anomalous Systemic Venus Return. Because of the dextrorcardia many veins grew in the wrong parts of his heart leaving him with a lot less oxygenated blood. He had a few other things to go along with it. He was at this time only 24 lbs. They finally were able to locate the hole in his heart after all this time too by doing an echo due to the fact that his heart is in a very odd position. They were not sure yet how to fix him and decided to wait until he gained at least 5lbs in fear that if they rerouted the blood that his left ventricle would not be able to handle the new blood flow and he could die.
I struggled for a year to get him to gain 5 lbs and at almost 3-1/2 years old he finally had to have the surgery because he was now very blue. No one was sure what to expect but I promised him that he was going to be pink when he came out of surgery. I prayed I would be right and that nothing would go wrong. He went down for surgery at 7:30am and at 9am the first incision had been made. Surgery lasted a little over 5-1/2 hours and by about 3:30pm we were allowed to go see him. I wished I had had my camera to get that first look at him on camera. He was the most beautiful pink child I had ever seen as he lay there sleeping. They had saved my child. They peeled off the other layer of his heart and made a baffle and routed 95% of the blood into it and brought it around to above the tricuspid. They used the same tissue to cover up all the holes that he had. From that day there was no stopping my child. He had few restrictions for such a unique problem that he had. At 5-1/2 he started playing baseball since it was about the only sport he would be able to play.
Today he is nearly 6' tall and a freshman in high school. No one believes that he has the condition that he does until they see his chest. He sees his doctor once a year and has an echo. Hopefully he will never have another problem and will just have to have check ups. He is
definitely my miracle child and I will always have a special connection to him. I will love him always.
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