Friday 13 May
Went to GOSH to see Dr D – Little S needed an echo scan to check the source of the heart murmur. Dr D told us that there were significant problems with Little S’s heart – she does have a hole between the lower two chambers (ventricles) of her heart but she is also missing the valve that allows blood to flow from her heart to her lungs. She has been supplying her lungs with blood via extra arteries that she developed before she was born!
In medical terms Little S has pulmonary atresia with verticular septal defect and multiple aortopulmonary collateral arteries: left pulmonary artery from left subclavian and right pulmonary artery from right coronary artery.
Dr D spent a fair bit of time with us, seemingly putting other appointments off, getting a second opinion from his boss and checking the current health of Little S’s heart with an ECG and an oxygenation test – her heart is working fine. But, even though she has no obvious symptoms, we were told that Little S has abnormal internal plumbing and is unlikely to live a normal life for long.
Little S looks and acts like a perfectly healthy baby with no outward symptoms of anything like a major heart defect. So we were in shock when Dr D broke the news to us and told us that ‘we would be spending quite a bit of time with each other over the next months and years’. Little S needs further tests (an angiogram) to ensure an accurate diagnosis.
We left GOSH in a numbed state, only interrupted by the fact that we had to figure out how to get the kids back from school as we took a lot longer at the hospital than expected. To be honest, we thought that they would do a scan and tell us that she has a small hole in her heart that would probably close on its own in time – this was not the case.
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