About Fourteen years ago a cousin of mine was born with a "hole in her heart", this is medically defined as a congenital heart defect. It basically means that there is a defect in the wall between two of the heart chambers. This is not uncommon and babies are born with this defect all the time. There are different sizes of holes and this determines how it may be fixed. In some instances the hole may close on it's own as the child get older. (This has been linked to genetics.)
A little over 50 years ago, her father's brother was also born with a congenital heart defect. At that time in 1951 there was nothing that could be done for this condition. Parents, (my great aunt and uncle) were told to not let them get active. They were basically left on bed rest most of the time. According to my dad, there were many trips to the hospital. They lived in a small town where the nearest hospital was in St. Louis, MO. They had a pediatrician that came to the home regularly to see about him. His heart eventually gave out from this condition, and he passed away at the age of 9 in 1961.
His brother's daughter, whom I mentioned at the beginning, was also born with this condition many years later. At this point open heart/"beating heart surgeries" had become somewhat routine. Due to the research from the 1950s to the mid 1980s early 1990s, the congenital heart defect his daughter was born with was able to be repaired. The doctors were able to go in through her foot to repair the hole. She is now a healthy striving, sports playing fourteen year old preparing for life in high school.
Through the many years of open heart research there were many failed attempts at repairing the heart. There were many times they thought they had it, but were actually failed attempts. Several patients lives were extended, but very few surgeries had lasting affects until the 1990s. I am sure during this time there were risks in the research on children. However, now because of the risks parents took with other children before her took, there are children like my cousin who go on to lead normal lives.
More research related to this topic and other topics on the heart in children can be found at www.childrensheartfoundation.org
There are no seven wonders of the world in the eyes of a child. There are seven million. ~Walt St
There are no seven wonders of the world in the eyes of a child. There are seven million. ~Walt Streightiff
Ginny,
ReplyDeleteGreat research story. It was as if some sacrifices led to the healthy development of your cousin. In part your story is the essence of research for the "greater good"!
This is a perfect example of the kind of research that may be painful but would have great benefits for all. Thank you for sharing this personal story. Without the sacrafices of the those from the past, we would not be where we are in the present.
DeleteGinny,
ReplyDeleteThis is a great story. I feel as though risk in research are just like real life. In order to learn about something you must go through many things. Sometimes you have gains from your life lessons and sometimes you have consequences. It is mainly what you do with the information learned to whether the risk was really a huge risk. Great post.
What an awesome story! See some benefits do outweigh the risks! Researching heart disease has saved your family. I enjoyed your post thoroughly!!!
ReplyDeleteThat is so amazing! I think it is amazing what research has done in the field of medicine and how this really does have such a positive effect on the physical development of many children and I'm glad that it had such a positive outcome for your family.
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