Doncaster hero heart Harley battles through tough start to life

Megan Todd from Wheatley has a heart hero son called Harley who is only three months old.

Here is Harley’s story as told by Megan:

Harley was born at 41 weeks on October 16, 2022. It was a quick natural eight-hour labour. It was so perfect.

We were lead to believe that Harley was a perfectly healthy and happy baby boy and we were discharged home the next day with absolutely no concerns.

When Harley was just nine days old he started to show signs of respiratory distress, I called 999 who had an ambulance sent out to us straight away. We were then admitted to the resuscitation room at our local hospitals A&E.

Possibly the most scariest thing I’d ever witnessed. It was suspected Harley just had a respiratory infection and was treated for sepsis & RSV on the children’s ward at Doncaster.

After being on a drip of antibiotics for 12 hours and his respiratory levels just not dropping and his breathing not calming down it was obvious something else wasn’t quite right and a specialist doctor in cardiology came in to tell us he was going to perform an echocardiogram on Harley.As we presumed and as we had taken him home like any other baby only nine days before we thought our baby was healthy we had no worries and genuinely thought the scan would show he was absolutely fine.

Our worst nightmare came true and we were told Harley had Coarctation of the aorta and a large VSD and that he would require life-saving open heart surgery within the next few days or else we would lose him. From then on it was just a blur.

Harley was ventilated, sedated and incubated and then transported to Leeds General Infirmary by the Embrace team with me in tow in the ambulance. When getting to LGI Harley’s condition continued to worsen, his organs were starting to fail and he wasn’t passing any urine. His liver and kidneys had started to shut down, surgery needed to be done within the next 24 hours. Again a complete blur.

On October 26 2022 I signed the papers and away went Harley down to surgery. It was possibly the worst day of our entire lives and we could never ever wish that upon anyone, the worst feeling in the world to new young parents.

Me being 23 and Ellis (Harley’s dad) being 24, we had never come across anything like this in our lives.We were told a 6-8 hour wait, no news was good news and to stay close to the phone. After 5.5 hours, we got the call that he was out and we could go and be with him.

Harley came through the surgery and came out the other side 10x better than the nurses and doctors had anticipated. He’d started to come alive again, he was passing urine, his organs were back up and slowly starting to work again.

The coarctation had been repairs and the aortic valve opened up, the VSD still remains and for the time being has had pulmonary bands inserted to help blood flow away from the lungs.Harley was getting better day by day and after six days on PICU we were moved to the ward where the real recovery began.

We could change his nappy again, dress him, hold him, cuddle him, play with him. I could be a mother again. Ellis could be a father and we could be a family again.Sadly Harley was never able to go back to being bottle fed and is still NG tube fed to this day due to suffering with Laryngomalacia.

His heart defects go hand in hand with it meaning it just isn’t safe for him to be bottle fed as we cannot put too much pressure on him as he silent aspirated when he was introduced to the bottles again.Harley will require further surgery in future to remove the bands and patch up the VSD if it doesn’t continue to close and heal on its own. But for now our baby boy Harley, or “Bug” as we like to call him is thriving and is recovering so well.

How have CHSF helped?

CHSF helped us a lot throughout our stay at LGI. We were provided with a room in the Brotherton wing (10 minute walk from Harley) so we could be with Harley as much as possible throughout it all.

It helped massively so we didn’t have to travel to and from our home town Doncaster just to be with him at Leeds.

We were provided with food vouchers so we didn’t have to worry about money and what we were going to eat too.

We were spoken to everyday and made to feel so welcome. We were asked every day how we were doing and made to feel okay and that our feelings were completely normal and validated.

CHSF helped us in more ways than one and we will forever be grateful for their help.

With me and Ellis being young parents we felt so reassured by the CHSF that we weren’t being silly, this wasn’t something that could have been prevented and it was nothing we had done.

CHSF saved all of our lives over the space of those weeks we spent at Leeds and I will forever be in debt to them and the amazing team of doctors and nurses and Harley’s surgeon Mr Jaber.

We have a text code for people to donate: Text CHSFWRD (plus any amount up to £30) to 70085.