Why?

Aman Bailwal is going to run 4 marathons in 4 days up and down Scottish Mountains to raise money for Tiny Tickers. 

He explains why...

In November 2021, Madi and I received some unexpected news at our 20 week baby scan. The sonographer had identified a potential concern with the baby's heart. After further scans, we were informed that our unborn baby was diagnosed with a heart condition called Double Outlet Right Ventricle (DORV) and, that whilst the range of potential outcomes was still broad, the baby would at the very least need open heart surgery in her first year of life.

What followed was a rollercoaster of emotions as we began to process the news. We found Tiny Tickers to be a great help. With a vast array of supportive information to prepare us on what lay ahead and countless success stories from other parents who had gone through a similar situation they gave us so much of the clarity which we were searching for.

Alina was born in early March 2022. She presented as perfectly healthy for that first week. We are so grateful that the heart issue had been identified at the scan. Had it not been, we may have been at home with no awareness of the critical danger she was in. Tiny Tickers' sonographer training is playing a key part in reducing the likelihood of this happening. We also noticed they took Alina's oxygen readings with a Tiny Tickers pulse oximetry machine!

After that first week, Alina started to get more unwell as she had to work increasingly hard to breathe. Again, Tiny Tickers' awareness campaign was really helpful for us at home being able to identify Alina's breathing issues early and take her into hospital. We were in hospital for 2 months, as she relied on increasing breathing support, which ended up with her on a ventilator receiving oxygen. This was a very tough time as her breathing slowly but steadily got worse.

Alina had her operation on the 29th April (my 30th birthday!) and is doing great in her recovery so far - long may that continue. All the signs so far are that she will go on to live an active and healthy life.

We are immensely grateful to so many people and organisations, and there was a very robust support structure in place for the three of us. Tiny Tickers were a really key part of that, and I felt compelled to do something to ensure that

• children get the best chance of survival; and 
• that parents get the best support through a difficult time.

By helping them get more pulse oximetry machines, spread parental awareness and train more sonographers, you can help increase the number of children surviving with congenital heart defects. 

What do they do, in summary? 

Tiny Tickers is a charity which wants to increase early detection rates of cardiac conditions because they know that spotting a defect early can improve a baby’s chances of survival and long-term quality of life. Around 6,000 babies are born with a serious heart defect in the UK each year, and around 1,000 of these newborns head home with no one realising their lives are in danger. They are changing that. 

Where do our donations go?

Tiny Tickers is focused on the following 4 key areas: 

• Funding life-saving equipment
• Spreading awareness for parents
• Family support
• Sonographer training

These were all relevant to us in our experience with Tiny Tickers above. 

So why are you doing 4 marathons over the mountains again? 

Good question! After receiving the news about Alina's heart defect, I felt powerless. I couldn't help my child at all, she was going to have to fight through open heart surgery, she might survive she might not - it was completely overwhelming.

I felt compelled to do something, and I knew that, even if it was obviously much easier than what Alina was going through, it had to be something where I would have to push very hard to finish, a challenge over multiple days. 

It felt like the right fit after watching Alina fighting day after day after day just to keep breathing.

The work Tiny Tickers do was key in maximising Alina's chances of survival, and helping us process, understand and cope with all that was going on.

Alina's story could have been so different without the amazing work these guys do, but the job is not done. Many babies do go home without anyone realising they have a serious heart defect. With your help we can provide a safety net for these 1,000 babies a year, increasing detection rates, improving their chances of survival and long-term quality of life.

This charity really is close to our hearts, if you are able to donate any amount then it will be hugely appreciated!  If you have any questions on any of the above - please do ask me! 

Thanks! Aman 

P.S. I have no idea if I will actually be able to finish this challenge - one day of this is longer than any hike I have done ever!