This page is dedicated to adults and children who have Mitral Atresia
When we brought Olivia home from hospital we thought she was a healthy baby, it was only when 3 weeks later she became very unsettled- constantly crying and regularly vomiting that we thought something was wrong, I was feeding her myself and didn’t think she should be being so violently sick after every feed.
We took Olivia to the GP who admitted her to our local hospital where she was treated for a possible urine infection, it was only when we had brought her home and she started with a repetitive cough that we once again thought something was seriously wrong and immediately took her back to hospital.
To cut a very long story short she was sent to Leeds General Infirmary (LGI) where we were given the devastating news of her condition. A few days later Olivia had her first open heart surgery, I can still remember the consultant explaining Olivia’s condition and how bleak the prospects were for her.
Olivia recovered from her first op but not until after spending 5 days being ventilated in ICU. The first 2 years of Olivia’s life were pretty difficult as she continued to be very unsettled and frequently sick. I remember feeling very envious when friends had healthy happy babies who were readily gaining weight, as Olivia continued to be poorly.
Olivia had her 2nd op (Glenn Shunt) age 2 , compared to the first this was much more straightforward, she made a fantastic recovery and we could see the benefits almost immediately, especially as for the first time in her life she had gained a appetite which was great to see.
Olivia continued to do well, however we knew a third op would be needed at some point and after seeing the consultant in October 2008 the results of a catheter revealed that her heart and lung pressures were high and it would be beneficial to start thinking about her third op. Olivia went in to the LGI on the 12th Jan 2009 and had her third op (Fontan completion), although we knew what to expect because of Olivia’s age this third operation brought a different kind of stress. Olivia questioned everything she had done and seeing her go through so much was heartbreaking. We were in the LGI for a month due to a number of complications, including a infection and collapsed lung.
Once home Olivia was like a different person, very nervous , constantly talking about hospital which was all to be expected. However after about 3 months she started to be like her little self again and eventually started to settle back in to school and life as she had before.
Olivia has just started Brownies, is learning to play the violin and regularly torments her younger brother Alexander, she is now doing well and most of the time she has enough energy to do exactly what she wants, we have also managed to put most of last years experience behind us.
Like most parents who have a child with a single ventricle condition the future is uncertain, but while we can we intend to let Olivia live life to the full and not spend time worrying about what the future may hold.
Wrote by Elaine Ayris
Olivia’s Dads campagin in the Telegraph and Argus
Elaine Ayris gave CHD-UK permission to use the photographs for this page.