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Ellie Harrison Payne 

Born on 25/12/11 (Christmas day) the best present ever. She 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 on Tuesday 22nd 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 Friday 2nd March 2012. Ellie has done amazingly well only staying in intensive care for 4 days after the big op!. She was off the oxygen by Thursday 8th March. Then feeding tube was removed on Friday 9th after some problems feeding Ellie decided breast is best and resumed breastfeeding which enabled us to go home. We were discharged on Saturday 10th March 2012. 19 day after being admitted.  We are so proud of Ellie she has proved what a fighter she is! 

Ellie coped amazingly until she was 5 years old when she underwent her second open heart surgery. She was in hospital for 7 nights. Ellie will need further surgery in the future. We want to fundraise for home to home appeal to provide somewhere for parents to stay her the hospital as when Ellie was in there was no where for her family or parents to sleep. 

Ellie and her family would like to raise money for Bristol Children's hospital. 

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