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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!
On Tuesday 19th June we had to call an ambulance as Ellie's lips and skin went blue. After close observations it was decided to scan her heart. On the 22nd June 2012 we were told that the small holes that Ellie (they were hoping would close over) have got bigger and need to be repaired. She has medication for 6 weeks then will have another scan and they will decide the best way to close the remaining holes.
March 2015- Ellie currently has a leaky valve which is being monitored and she is expected to nee further surgery in the next 2 years.
Ellie and her family would like to raise money for the heart foundation as the research and work they do is amazing. Unfortunately Ellie with need further operations when she is older as the piece she has had put in during the operation will not grow with her so she will need operations to replace it when she gets older. We would really like heart surgery to progress further to make Ellie’s next operation less invasive and reduce the risks.
Ellie has a just give page if you would like to make a donation to the British Heart Foundation and leave a message of support go to http://www.justgiving.com/BabyElliePayne1 or by texting YHRA56 followed by the amount you want to donate to 70070 (example YHRA56 £5 to 70070)
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