This week (12-18 May) is Children’s Heart Week. I have two beautiful daughters, one of whom has a severe and complex congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS). This means that the left side of her heart is severely underdeveloped. We first discovered that Jessica’s heart had not developed correctly at our 20 week scan. Her journey through life has not been an easy one.
We were told that she was unlikely to be suitable for surgery and would possibly not survive the pregnancy. Our journey has taken us through pioneering in-utero surgery and then several open-heart surgeries following birth to bring us to where we are today. You can read more about our journey so far here and about Jessica’s continuing journey over on her own blog. I will be posting more about our journey and facts about CHD in general throughout Children’s Heart Week as well as highlighting the work of some wonderful charities who have been part of our journey.
Some facts about CHD
- Approximately 1 in 100 babies are born with a CHD. Some are detected at the 20 week scan. Others are not detected until after birth. Several heart groups have been campaigning for pulse oximetry screening to become part of the newborn check in order to improve detection rates and therefore improve survival rates.
- There are more than 35 different CHDs.
- CHDs are responsible for twice as many child deaths each year than cancer. They are the biggest cause of death from a birth defect. 1 in 5 babies born with a CHD will not live to see their first birthday.
- Thanks to research and improvements in surgery, the death rate for CHD has declined by 30% in the last ten years.
- 12-15 babies with CHD are born each day in the UK
- CHDs cannot be cured and so children born with CHDs will require heart monitoring throughout their life. Many will require multiple open-heart surgeries. Some, like Jessica, will need surgery within hours of birth.
Jessica will need another open-heart operation in the next couple of years to help improve her heart function. Whilst her future is uncertain and we live very much day-to-day, not looking too far ahead, we are very aware that just having got her this far today is a huge blessing. During our journey, we have encountered families who have lost children to CHD.
Today’s charity: The Charlie Jones Foundation
Today’s highlighted charity, the Charlie Jones Foundation, was set up following the death of baby Charlie Jones from HLHS. Today would have been Charlie’s fifth birthday. Charlie’s parents also sadly lost his younger brother Kian due to HLHS. They now help raise awareness of HLHS and other CHDs through social networking sites, and their Book of Love project (in which Jessica featured).
The Charlie Jones Foundation also offers support for newly diagnosed and bereaved families (through Wings of a Butterfly). They also fundraise for Friends of PICU, another charity which helps provide equipment and support to help children on the paediatric intensive care unit (PICU) at Southampton General Hospital and their families. This is another charity which is very close to our hearts. Jessica has spent several weeks on PICU recovering from her various surgeries.