When she was born, Ellie weighed 10lb and appeared fit and healthy. However Ellie's breathing always seemed a little laboured and erratic.
At her 6 week check (the appointments came late so Ellie was 8 weeks old) the doctor asked if we had any concerns. I said we were still concerned about her breathing even after doctors and health visitors had told us it was fine. The doctor examined Ellie and thought that she had a heart murmur so referred us to Bath RUH. At Bath RUH in February 2012 we were told it was not a heart murmur and that Ellie has Common arterial Trunk (Truncus Arteriosus) and would need open heart surgery to save her life.
What is Common Arterial Trunk (Truncus Arteriosus)?
When a baby’s heart is developing in the womb, one large blood vessel, the truncus arteriosus, should divide to become the two main arteries: the aorta, and the pulmonary artery. The aorta carries red (oxygenated) blood from the heart to the body, and the pulmonary artery carries blue (deoxygenated) blood to the lungs. If the aorta and pulmonary artery do not divide, the child is born with common arterial trunk. This one big artery has one large valve instead of there being two arteries with pulmonary and aortic valves. A part of the wall between the left and right ventricles is missing (Ventricular Septal Defect). This means that the truncus arteriosus is able to receive blue blood from the right side of the heart, and red blood from the left side of the heart. There are 3 possible types. Ellie had type 1 - the pulmonary artery branches off just above the valve. The result of truncus arteriosus is usually that too much blood is going to the lungs and too little red (oxygenated) blood is reaching the body.
We were transferred to Bristol Children's Hospital on the 23rd February 2012 where Ellie had open heart surgery on 2nd March 2012. Ellie has done amazingly well only staying in intensive care for 4 days after the big op! She made an amazingly fast recovery and we were discharged on 10th March 2012. 19 day after being admitted. We are so proud of Ellie she has proved what a fighter she is!
March 2014 Ellie faced her second open heart surgery. Ellie was in the operating theatre for over 6 hours where they replaced her conduit. Ellie made an amazing recover and came home a week later!!
Ellie is currently enjoying her new found energy and loving life.However she will need ongoing surgery throughout her life.