May 01, 2008
After a complication with bleeding from a tonsillectomy, my 5 year old son was admitted in to the hospital for emergency surgery to repair the tonsil bleed. While he was in there the staff notice that his blood pressure was very high...(150's/170's over 100's). They asked me to follow up with his pediatrician. When we followed up the pressure was still high. She sent us to a pediatric cardiologist and they did an echocardiogram. They found that the left side of his heart is enlarged. This is due to having high blood pressure for a long time undetected. After seeing his pressures, (now 200's over 100's) the cardiologist admitted him into the hospital for testing and to get his blood pressure down. After 10 days in the hospital, and after many labs, cat scans and MRA's, he was diagnosed with Mid-aortic syndrome. This sydrome effects the abdominal aorta and arteries leading to the kidneys and intestines. The arteries leading to his kidneys and one leading to his intestines are narrowed. This causes very high blood pressure and has also caused one of his kidneys to be smaller than the other. At the moment, he is on four blood pressure meds and potassium. They will be operating on him shortly to try and fixed the narrowed arteries.
The reason i am posting this is because i want to know if there is anyone else out there that has children effected by this syndrome. When you go online to try and find info, it is very hard to find. This is a very rare syndrome and i am really looking for some information on this. I just hate that we have so many unanswered questions. If anyone out there has info, or advice it would be so appreciated.