Heart murmurs

Aqilah was detected with heart murmurs during the initial investigation. She has been referred to Queen's Medical Centre for further investigation. In April 2008, the doctor confirmed that it was an innocent murmur which is quite usual for kids. However, he noticed that the valve was a bit dilated and needs further investigation. 'Heart murmurs' will occur if the valves become damaged by stored mucopolysaccharides. The heart valves are designed to close tightly as blood passes from one chamber of the heart to another in order to stop it flowing back in the wrong direction. If a valve is weakened or changed in shape it may not shut firmly enough and a small amount of blood may leak back causing strain of the heart.

The kids had heart scanning during the last visit (13/6/08) at the children's hospital, and the doctor confirmed that their hearts are so far ok. What a relief! The last visit to the hospital was quite a hectic one; after the heart scanning, the kids had MRI. After that they had hearing test as some degree of deafness is common in individuals suffering from MPS IVA. Adnin had ear infection on her left ear and has been treated on the same day. She also had another MRI scan to confirm that she needs the cervical fusion.

Since January this year, we have been to hospitals for a variety of check ups. When the kids have been referred to Birmingham, we have to take the train to get there. We tried driving once, but it was not worth as the petrol and parking costs were expensive. Two hour parking near the hospital costs £5. Usually two hours is not enough and we usually spend almost a day at the hospital. Train rides to and fro cost around £25. Don't ever think of converting it to Malaysia ringgit!