Mum: Sara McKeith
Condition: Kawasaki Disease
Dominic was born at 27 weeks weighing 1lb 15oz and at eight months old was diagnosed with Kawasaki disease. Kawasaki disease causes the blood vessels to become inflamed and swollen, which can lead to complications in the blood vessels (coronary arteries) that supply blood to the heart.
Dominic became very poorly within a few weeks of the symptoms appearing, he went into heart failure and was rushed to the neonatal unit in Dewsbury Hospital to be ventilated. Dominic was transferred to the PICU at the LGI where Dr Dickinson and Dr Wilcoxson diagnosed the Kawasaki’s.
Dominic continued to deteriorate and we were told that he needed open heart surgery. He needed his Mitral Valve replacing with a mechanical one but the odds were against us with a 50/50 chance that he would come out of it alive.
13 hours later he was back on PICU and no one knew what to expect. Two weeks after the operation he was extubated and back on Heart Ward for only 4 weeks when we were discharged.
Unfortunately, this was only the beginning for Dominic, at age three he began having problems with his heart rhythm and was diagnosed with supraventricular tachycardia (SVT) and atrial flutter. Medication helped control the SVT but not the flutter. Dominic continued to have rhythm problems until he was diagnosed with infectious endocarditis and had to stay in hospital for 6 weeks on IV antibiotics.
The unfortunate thing was that the Endocarditis sat on his aortic valve and it became so leaky that it was unrepairable and Dominic had to have his second open heart surgery to fit a mechanical aortic valve.
Dominic made another great recovery though continued to have rhythm problems until he was fitted with a Pacemaker at age nine. Dominic has since stayed out of hospital and been free of any rhythm problems for six years.
Dominic is now 15 and over 5 ft tall which has meant he has grown out of his mechanical valves. He has just undergone his third open heart surgery and is recovering well. Adult size valves have been inserted into his heart and he will need his Pacemaker replaced next year.
Due to the amazing staff that have been involved in Dominic’s care he is here today and we will be forever indebted to them.
To Mr Weeresena, (Dominic’s first surgeon), Dr Dickinson and Dr Blackburn (first and second consultants), Dr Hares, Miss Van Doorn (his surgeon now), the fantastic team on Ward L51 and Children’s Heart Surgery Fund. Because of you, we are looking forward to celebrating Dominic’s 16th Birthday after Christmas. Thank you.
How has your support helped Dominic and his family?
Dominic has had an INR kit now for 12 years. For the first two years of Dominic’s treatment we were back and forth to the hospital three times a week. I didn’t drive, Dominic was 24 hour oxygenated and due to insurance purposes was not allowed on buses – so we had to pay for taxis to and from the hospital.
The introduction of the INR machine to our family has meant that we are at hospital less and Dominic doesn’t have to go through the trauma of venous blood tests weekly.
We even take it on holiday with us. We communicate with the clinic from our holiday meaning we can continue our holiday without disrupting family life. The test itself takes less than a minute. It is a small finger prick of blood and the results are instant. It is truly the best piece of equipment that we have been provided with through the generousness and supportive nature of Children’s Heart Surgery Fund.
We are very fortunate that we are quite local compared to some families, however CHSF still provided accommodation while Dom was in intensive care and HDU. This reduced my stress and anxiety levels enormously enabling me to be near to Dom and see him regularly, continue to care for him and maintain the bond. The accommodation on site is very clean and friendly with all the facilities to allow you to stay in hospital, while maintaining some comforts of home.
No words can ever describe how grateful we are that people all over support and donate to Children’s Heart Surgery Fund. Without the amazing generosity of all the supporters, my family and families alike could never have the amazing equipment to allow our children to have as normal life as possible. Thank you.
If you would like more information about congenital heart defects in babies, children and adults you can visit leedscongenitalhearts.com, funded by CHSF!