Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Friday, 7 February 2014

CHD Awareness Week 2014

Today is the beginning of congenital heart defect (CHD) awareness week and so we have put together a video summarising Jessica’s journey so far in order to help raise awareness.



Here are a few facts about CHD:

  • Approximately 1 in 100 babies are born with a CHD. Some are detected at the 20 week scan although 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 and 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 and many will require multiple open-heart surgeries, some, like Jessica, within hours of birth.

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