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My operations

ALCAPA (Anomalous Left Coronary Artery From the Pulmonary Artery) is a very rare, but serious congenital cardiac anomaly accounting for approximately 0.25-0.5% of all congenital heart disease. Left untreated, the mortality rate in the first year of life is 90% secondary to myocardial ischemia or infarction and mitral valve insufficiency leading to CHF (Congestive Heart Failure). Sudden death may occur because of inadequate collateral circulation between the left and right coronary artery systems. ALCAPA Heart

In layman’s terms it is when the coronary artery is connected to the wrong part of the heart causing the blood to flow the wrong way around the heart which can lead to poor weight gain in my case, along with irritability and pain.

The only treatment available currently is surgery which involves reconnecting the coronary artery to the correct place on the heart. This procedure is delicate and lengthy and the surgeon who operated on me is widely respected as one of the best in the world in his field.

My operation took over 5 hours and was successful. However, I also had a secondary condition called severe mitral valve regurgitation which hampered my attempts to recover from my first operation. So, 3 weeks later, I had a second operation to repair this.

Mitral valve regurgitation — or mitral regurgitation — is a condition in which the heart’s mitral valve doesn’t close tightly, which allows blood to flow backward in the heart. Mitral valve regurgitation is also called mitral insufficiency, or mitral incompetence.

When the mitral valve doesn’t function properly, blood can’t move through the heart or to the rest of the body as efficiently. The condition can leave you fatigued and short of breath. As many as one in five people over age 55 has some degree of mitral valve regurgitation.

Treatment of mitral valve regurgitation depends on the severity and progression of the condition and signs and symptoms. For mild cases, treatment may not be necessary. You may need heart surgery to repair or replace the valve for more severe cases. Left unchecked, severe mitral valve regurgitation can lead to heart failure or serious heart rhythm irregularities (arrhythmias).

My second operation was carried out on 31st March 2008. Mummy and daddy were told that, due to my size and the fact that I had already undergone a major operation 3 weeks earlier, that there was a probability that I wouldn’t survive this procedure.

The surgeon told mummy and daddy that he was going to try to repair my valve so that I would probably not need further operations in the future. However, if he couldn’t repair it he would have to replace it which would mean I would need further operations as I grew to replace it.A week before my second operation

Mummy and daddy had to agree to let me have the operation and I know it was a very difficult decision for them to make. The operation took nearly 6 hours and mummy and daddy were very brave waiting to hear how well I’d done. I’m glad they agreed because the operation to repair my valve was a success and I started to recover much quicker than I did after my first operation! In fact the very next day I had the 3 tubes that were helping fluid drain from my chest removed as I was doing so well!

As I started my recovery I was slowly taken off some of the drugs that I needed to help me. These included paralysing drugs, so I kept still, sleeping drugs to help me conserve my energy and lots of different painkillers. One of these was Morphine which mummy and daddy were warned may take me a long time to come off because it was so addictive. They were told I may suffer withdrawal symptoms but I surprised everybody and didn’t suffer any major side effects from it.

I was eventually allowed to go back to my local hospital in Norwich where I was given my own room again. It was ok but a bit lonely when mummy and daddy couldn’t come and see me. I liked to watch my television when I was awake, but I did sleep a lot.

Mummy and daddy were told that I would need to stay in hospital for a while and learnt how to give me all my medicines at the right times during the day. I have to take medicines at 6am, 7am, 12pm, 2pm, 3pm, 6pm, 10pm, 11pm and 12am! Sometimes I only have 1 and sometimes I have 3. They are all to help me recover from my operations.

The doctors have told mummy and daddy that I am going to be fine and will take up to a year before I fully recover, although there are signs of damage to my heart caused by my heart failure, this shouldn’t cause me any long term problems.Me at home June 2008

Now I am home and I have settled very quickly. I fall asleep at 10pm and have to be woken up to have my milk and medicines! I sleep through the night until mummy or daddy get me up at 6am. I am much happier now and my chest doesn’t hurt like it used to so it was definitely worth going through what I did.

I hope my story helps other mummies, daddies and their children who have to go through a similar experience.

Thank you for visiting my website.

Love Tiana xx