Caroline's Story
My name is Caroline. I along with three siblings have Marfan’s. Three others are unaffected. My father also had the condition. When I was a child I always knew that there was something wrong. I was very tall for my age and gender and extremely thin. I was also very slow at sports and more times than I can remember I ended up hobbling along with sprained ankles. I had to wear glasses from a very young age and that was when I first heard the word Marfan’s whispered in the background. There was never mention that I may have heart problems.
Years went by and in 1995 my father died from a leaking valve. We were all sent as a family to the Cardiology Department in the Mater Hospital for checks and my younger brother, Gordon and myself were diagnosed with a leaking valve and dilation of the aorta. My oldest brother was diagnosed with slight dilation of the aorta. Gordon suffered ‘Sudden Lung Collapse’ in 1997 and had two lung operations in St. James’s Hospital, Dublin 8 which were very successful and then suddenly on the 6th of March 1999 Gordon passed away from a ruptured aorta. Our family was devastated and will always miss him very much.
A couple of months later I got pregnant and at 20 weeks I went into premature labour. Our little girl, Sarah, survived for five more weeks and was delivered stillborn on the 21st December 1999. It was a very difficult time for my husband and me. Doctors in the National Maternity Hospital informed us that it was an incompetent cervix probably caused by Marfans which resulted in me going into labour prematurely. In January 2000 my Cardiologist informed us that I required ‘Aortic Root Replacement’ and repair to a leaking valve. On the 13th September I underwent surgery which was very successful.
The following year we decided to try for another baby after discussions with my cardiologist and obstetrician. A suture was inserted at week 14 of the pregnancy and on the 1st March 2002 our little girl Ellen was born into this world a week overdue. What a relief to have it all over. A wonderful end to a long and very traumatic period of our lives! As of now doctor’s feel that Ellen is unaffected, but only time will tell.
