We all assume our hearts are ok. We assumed Molly’s heart was ok for the first 10 months. When we speak to our friends and family there is always an assumption their children’s hearts are ok too - as nothing was picked up in pregnancy.
Whilst Molly was recovering after her surgery we were visited by professional rugby player Zane Tetevano from Leeds Rhinos. At the height of his career and whilst in peak physical fitness, he suffered a stroke during training due to undiagnosed CHD.
On average mothers only have a 50/50 chance of heart defects being identified during pregnancy (NICOR statistics). Some trusts have much lower rates of detection than this. Our trust, Doncaster and Bassetlaw had an average detection rate of 37% the year that Molly was born. Our hearts aren’t ever routinely scanned again after the 20 week scan. Half of trusts like ours don’t even keep records of the heart at this routine scan when they perform it.
Many people like Zane are actually diagnosed in adulthood.
The difficulty in diagnosing CHD is why some NHS professionals receive additional levels of antenatal screening when they are pregnant. These professionals know the risks and the importance of the 20 week scan. They know the limitations of routine antenatal screening. Similar to CHD families, some NHS staff exposed to CHD receive additional “reassurance scans” or scans performed by cardiologists in their pregnancy. Like us, they know how difficult CHD is to detect. Multiple NHS professionals have disclosed to us that they have received this additional support due to their role.
We appreciate these professionals are exposed to much trauma that the general population are not. The majority of us just don’t know anything about CHD until we receive the diagnosis. We feel it is a reasonable expectation that a record is made of our heart views when these routine scans are performed. Views should be retained.
Zane’s story is below. He’s a great guy and really made time for the families like us on the ward. He was shown round by the Children’s Heart Surgery Fund. It was a very welcome distraction for us during such a difficult time.