My Little Tiny Ticker

Before Elijah was born, I didn’t have any experience with heart problems, other than the odd family member having a ‘dodgy ticker’. I didn’t really know what this meant or what could cause it. I certainly didn’t know what Congenital Heart Disease (CHD) was. Soon, that was about to change and I was going to become somewhat of an expert on the subject.

When Elijah was born, 12 hours after birth he began having what we now know are called ‘Tet spells’, or, ‘dusky episodes’. Changing colour to a bluey/ purple colour and then regaining his normal pink colour. Upon his admittance to NICU he was diagnosed with a critical CHD called Tetralogy of Fallot (TOF). According to the NHS 1 in 111 babies born, are born with a CHD, this is also the cause of 1 in 13 infant deaths. Nothing was picked up on my scans, and we even had extra ones, all through the pregnancy we were told what a healthy heartbeat Elijah had. Never in a million years did we think there was something so wrong with our baby’s heart.  

I remember the crushing realisation our baby was severely ill when we were pulled into a room before our NICU discharge to be told what to do if Elijah had a spell, or if he needed CPR after going into heart failure. Because of this, in those first pre-surgery months I rarely left him with anyone. We were told to look out for the signs Elijah’s heart may be failing like having a blue tinge to him especially above his lip, not feeding, not putting on weight and sleeping a lot.

When Elijah was diagnosed, I felt my world crashing around me, family and friends were devastated for us, and all asked the same question. Why wasn’t this picked up on? After all we had numerous scans, and with 4 structural defects surely this is something that should have showed up? We were so lucky that we were in the right place at the right time when Elijah began to spell. If we were at home, this could have been missed and who knows what might have happened. Depending on the severity of the condition and the baby’s general wellness, the surgery for TOF is normally carried out within the first year.

However, the importance of early CHD detection is paramount for those that may need surgery within the first few hours of life. Time and lives can be saved if the CHD is picked up on a scan before birth. I came across the work of the charity Tiny Tickers when I began writing and blogging about Elijah’s journey. I have written for them, and proudly promoted them across social media for the amazing work they do for the CHD community. They are the only charity that focus on improving early detection and diagnosis of CHD which happens to be the most common birth defect. This surprised me so much when we were in NICU with Elijah. I knew no one else whose child had been born with CHD, however slowly and surely on our journey we found out about someone’s friend, a brother, and aunt or even a celebrity that had CHD in one form or another.

Tiny Tickers, have two main goals, one is to provide essential and lifesaving training to hospitals, medical staff and sonographers about the early detection of CHD during the 20-week scan. They also provide a support network, advice and support for those who have received a CHD diagnosis. This is vital as it can be a very isolating time. They believe no baby should die from an undiagnosed heart condition.

I recently posted about their ‘Think 20’ campaign which I myself used at the fetal medicine scan I had with my second child. I urge anyone who is pregnant to head over to their website and request a Think 20 pack. You take this with you to your 20-week scan and give it to your sonographer. It gives them guide of what to look for when they are examining the heart. They also provide packs on what to symptoms of heart failure in a baby as well. The more informed you are, the more educated we become on CHD via the awareness we raise the more lives we can save.

The shocking statistic is that every 2 hours in the UK a baby is born with a serious life threatening heart defect just like Elijah. More awareness needs to be raised, and more training and research must be done to save lives. Tiny Tickers will be doing just that when they appear on BBC Lifeline with Gabby Logan on Sunday 21^st May at 16.00. Afterwards this can be viewed on the following link;

www.bbc.co.uk/lifeline

It shows the stories of two babies, and their two very different stories and the harrowing realisation how important early diagnosis of CHD is. To carry on their amazing work donations are needed;

£5.00 could pay for 2x Early Diagnosis Packs

£10.00 could help provide 1000 heart cards which display the signs and symptoms of heart failure

£25.00 could provide 40 Doctor’s surgeries with lifesaving info on heart problems in babies

£75.00 could train 1 sonographer to get specialist training

Donate now

These amounts do not seem a lot, but they could have a huge impact on the lives they could save.

Please do check out the Lifeline Appeal and spread the word via social media, let’s raise as much awareness as we can and help give others the chance that my tiny ticker had.

Visit the Tiny Tickers Website

You can read more about the appeal here

Or order your own Heart Card here