CHD Awareness

Jessica looking at some geese on a pond

Challenging the assumptions about my heart child

One of the things I find challenging as a heart parent is dealing with people’s assumptions about my heart child.  While many of them are well-meaning, they can be frustrating.…

A heart with the text "Heart to Heart" on one side and a picture of hands making a heart over a child's chest with the text "A linky for sharing posts about CHD"

Heart to Heart – July 2014

Our journey as a heart family began just over three years ago at a routine 20 week scan. We arrived at the scan that morning as excited parents-to-be, looking forward…

Breastfeeding my heart child: getting back to the breast after chylothorax

Six long weeks of not being able to give Jessica my milk due to a chylothorax felt like an eternity at times. Six long weeks of continually expressing to keep…

Jessica on PICU just before her first open heart surgery

#NHS66 – Thank you NHS!

Today is the NHS’s 66th birthday. The Big Up The NHS campaign started in August 2013 on Twitter. This campaign aims to counteract the huge amount of negative stories about…

A bag of little bottles of frozen expressed breastmilk

Breastfeeding my heart child: a ban on mummy milk

Sitting next to the hospital cot in the early hours of the morning, with my four month old daughter blissfully breastfeeding, I wanted to freeze the moment and hold it…

In pursuit of a miracle: how in-utero surgery gave my child a chance to live

“If I was seeing this in a newborn baby, I would be advising against surgery as it is so unlikely to be successful.”   I was 22 weeks pregnant with…

Baby Jessica in intensive care, stroking Daddy's face

Being a heart dad: a personal reflection

For Father’s Day, I asked my husband to share a post about his journey as a heart daddy. This is his raw and honest account of his feelings about the…

Me holding Jessica in intensive care

Children’s Heart Week Day 7: I am a heart mummy

I am a heart mummy.   From the day I discovered that my little girl’s heart had not formed quite as it should have done, I became part of a…

Windmills in Holland

Children’s Heart Week Day 6: Welcome to Holland

I have seen this essay shared many times by other heart parents, and parents of children with additional medical needs. It is a beautifully written piece and one which helps…

Children’s Heart Week Day 5: Feeding

Feeding is something that can be a big cause of concern for parents of children with CHD. They often require more calories than heart-healthy children but can get quite tired…