Here’s a little insight into Jamie’s Life from his Mummy – Karen Goodwin
Jamie’s condition was diagnosed during the 20 week scan of the pregnancy. He has ‘Hypo Plastic Left Heart Syndrome’, the most complex and serious of all heart conditions. Jamie is COMPLETELY missing his main pumping chamber, some children’s pumping chambers can be present but underdeveloped. Without surgery, this condition is fatal after the first few days of life! There are three stages to Jamie’s surgery; the 1st was when he was a few days old, then again when he was 6 months old and then his most recent; stage 3 was in just May of this year at the Glenfield hospital. A month before his operation Jamie needed to be picked up to walk most places and reluctantly had to use a pushchair when going on trips out. He regularly had to be admitted to the Leicester Royal Infirmary for treatment of pneumonia as he was prone to chest infections. We spent a month in hospital after Jamie’s 3rd open heart surgery and he had to endure 3 painful chest drains protruding out from his stomach and external pacing wires! We attend regular check-ups every other week!
Jamie’s oxygen levels (pre stage 3) were very low (but normal for Jamie) as peace of mind for us as parents we purchased a SATS monitor that clips onto Jamie’s finger and reads his oxygen levels whenever he felt tired or seemed unwell. We also continue to use a breathing monitor during the night. Post stage 3 Jamie requires Warfarin daily to thin his blood as he is at high risk of his blood clotting and having a heart attack.
Jamie’s INR is a separate machine; Jamie pricks his finger & puts his blood onto a test strip that reads how his blood is clotting. I have to ring the results through to the Glenfield and then ‘Egbert’ tells me how much Warfarin I have to give to Jamie. The SATS monitor reads his oxygen levels by just clipping into his finger. It can be done daytime or evening but mostly when he feels unwell.
Jamie’s daily routine is to take 4-5 tablets a day and to test his blood clotting ratio every week using an INR machine which we now have at home instead of travelling to the hospital, He is such a brave boy
to have experienced so much fear and pain at such a young age and to have to self-test his blood by pricking his finger with a needle takes a lot of courage! Jamie finds things particularly difficult during the
winter months as he gets cold very easily and struggles to catch his breath, often needing an inhaler.
We wanted to raise funds for children like Jamie whose parents feel more reassured by having certain pieces of equipment at home as these machines cost so much! for example- SATS monitor approx. £100,breathing monitor £150, INR Machine with test strips £550.
Sadly the Glenfields paediatric heart unit may be closing and our nearest unit will be Birmingham! Adding at least an hour to our journey! Some children in heart failure may not survive the extra travelling time and is therefore a very important point to consider!
Best wishes Karen x