Parents Blog

The Good News Bulletin

Even though our small charity is facing our toughest months in our 20 years we are still here… delivering support and services amidst the harshest of circumstances. So we wanted to share the good news; the news that has kept our spirits up over the last few months. SUPPORT FOR PARENTS: We continue working hard…

Your baby needs open heart surgery

These were the words that we heard on June 5th this year. The words that took my legs and turned them to mush. The words that made my own heart break. The words that saw me lifting my face to the sky and begging, desperately pleading, for our little girl to be ok. Fear, guilt,…

The two hardest moments of my son’s heart surgery

In a new book, The First Breath, the author Olivia Gordon tells the story of how modern medicine saved her son’s life, and his open heart surgery. Joel’s heart troubles began as a premature baby in neonatal care, when he suffered from supraventricular tachycardia and abnormal heart rhythms. Cardiac surgery at the age of four,…

Why pulse oximetry testing is important to me – Natasha’s story

Below, Natasha, mum to baby Tommy who tragically passed away with an undetected CHD, tells us her views on the test that could save your baby’s life. If you’re a parent or carer with experience of CHD, we want to know what you think. Is pulse oximetry testing important to you? If so, why?

The Conflicting Emotions of a Heart Mum

When we were first admitted into the Neo Natal Intensive Care Unit and Elijah was diagnosed with Tetralogy of Fallot, I couldn’t take it in. To protect myself from actually acknowledging that my baby wasn’t healthy, that he wasn’t the baby that I had imagined holding in my arms for nine months, and our start…

The Next Chapter As A Heart Mum

For the last couple of weeks we have been looking around primary schools for Elijah who is due to commence school in September 2019. I have found the whole process very conflicting, especially as a heart mum.