It’s three years today since we were told that Jessica was unlikely to be suitable for surgery and that she would be offered comfort care after she was born. However, a throwaway comment about in-utero surgery at that appointment led us to the first step in Jessica’s journey. This pioneering procedure at 28 weeks’ gestation gave her a chance of life.
We were very fortunate in that Jessica’s condition was picked up antenatally. If it hadn’t been, she would not be here today. However, not all CHDs are picked up during pregnancy. It is important to be aware that the 20 week scan is not just to see the baby and find out the gender. The scan is primarily to look for any abnormalities.
Asking questions at the 20 week scan
With regards to heart defects, there are five important questions to ask:
- Is the heart rate normal?
- Did you look at the arteries as part of the scan?
- Are the heart and stomach in the correct position?
- Did you see four chambers?
- Is the heart function normal?
Today’s charity: Little Hearts Matter
Today’s highlighted charity is Little Hearts Matter. This charity provides information and support to children with single ventricle heart conditions (such as hypoplastic left heart syndrome) and their families. We found their antenatal pack invaluable when we first received Jessica’s diagnosis and were struggling to get our head round it all. It helped us understand more about her heart condition and the options available to us.
Little Hearts Matter provide information about surgical procedures and preparing children for hospital. They also provide lifestyle information, such as feeding concerns and preparing for school. They have a telephone support line staffed by parents who are able to share their experiences and listen, and a bereavement support service.