National Heart Month: Down's syndrome and heart conditions

Today it snowed ever so slightly for a few minutes whilst I wheeled Coraline to preschool, and the blossom was out on the trees. An ordinary, magical day!

Awareness of heart conditions

It’s #nationalheartmonth in February each year to raise awareness of heart conditions.

@echoukcharity (the Evelina London Children’s Hospital’s heart organisation, providing support to children and young people with heart conditions) have invited people to share heart month photos.

Down’s syndrome and congenital heart conditions

About 50 percent of children with Down’s Syndrome are born with a heart condition. Coraline was diagnosed at birth with an Atrioventricular Septal Defect (AVSD) which meant she had two holes in the heart and a leaking valve.

Paediatric heart surgery

Coraline had open heart surgery at the Evelina London Children’s Hospital on 02 November 2018. Amazingly we were back home again on 07 November 2018. She was 15 months old. Until the surgery we were seen regularly at the Evelina, and asked not to go to children’s groups or mix with other toddlers, so that Coraline didn’t get ill (as her system might not have handled it and she might have had to go into hospital). If you can imagine, Coraline did not do this for her first 15 months. There was a brief period of a couple of months when we were allowed to mix a little more, which happily coincided with our wedding and then honeymoon to the South of France in July 2018. Even so, we had to be vigilant.

This is why it’s amazing that today I can walk through the snow and blossom to drop Coraline in to a room full of toddlers. Coraline also has a cold. Now we go for a yearly check up at the Evelina. Thank you for ordinary, magical days Evelina London! That’s what you’ve given us!

You’ve also given us the most phenomenal level of care, and attention from every single member of staff, from Coraline’s direct team of doctors and nurses to everyone else we met, not least Coraline’s funny and relaxed surgeon who explained everything so well. We’d like to say thank you, and to let you know we think of what you did for us and how you cared for Coraline all the time in the back of our minds! ❤️