Running together for our Heart Warrior

In April 2025 we (Rosie & Michael) will be

running two big races side by side, for not 1 but 3 charities that have recently become close to our heart.

On April 6th we will be running London Landmarks Half Marathon for Evelina Children’s Heart Organisation (ECHO).

We will then be running the London Marathon on April 27th for British Heart Foundation and Evelina London.

Our Story:

We conceived Louis naturally as a beautiful surprise and welcomed the good news at 9 weeks of pregnancy that he did not have Cystic Fibrosis like his sister. However, at our 20 week scan we received a diagnosis of a different medical condition, and this was the beginning of the journey when Evelina London began providing care for our baby boy.

During our 20 week scan they had found a problem with the baby’s heart and told us that we would need to speak to a specialist. The next day we had an appointment at Evelina London fetal cardiology department, where we had an echocardiogram carried out on babies heart, and was given the diagnosis that our baby has a major congenital heart defect (abnormality of the heart that develops in the womb). Our hearts where shattered, we couldn’t believe we had escaped one diagnosis but was recieving another for our new baby.

There are many different types of CHD, but Louis has ‘Tetralogy of Fallot’.

There are four main problems with TOF:

1. There is a large hole between the pumping chambers of the heart

2. The pulmonary valve is narrow, and muscle below it thickened

3. The right ventricle is enlarged and more muscular

4. The aorta sits over the left and right ventricle, instead of just the left

Because of these abnormalities, oxygen rich and oxygen poor blood mix together, this means that the blood being pumped round Louis’ body doesn’t contain as much oxygen as it should.

Following his diagnosis at 20 weeks of pregnancy, we continued to have follow up appointments and regular scans with Evelina London to monitor his heart all the way through my pregnancy up until his emergency arrival due to haemorrhaging from placenta previa complications, at 3am on the 30th August, at 36 weeks gestation.

When Louis was born he was cared for immediately by cardiology doctors and neonatal intensive care team. He required oxygen support immediately, and after a period of stabilising him I was able to get a quick cuddle with him, before he was taken to the neonatal intensive care unit.

We knew that Louis would need open heart surgery at some point, and it was always a matter of monitoring him when he was born to see how his body copes, as to when that surgery would be, as every baby with TOF can have different outcomes and surgery plans.

Unfortunately, Louis’ oxygen saturations began plummeting very quickly over the coming weeks, where we spent much of his life in hospital being supported with his breathing and feeding. In his first 7 weeks of life, we had spent just 10 days at home together as a family. The goal was to get Louis to 5kg before his operation, but unfortunately he was getting very poorly with oxygen saturations dropping as low as 53%, despite the oxygen and breathing support he was receiving, and he needed to have surgery imminently.

On the 19th October, Louis being just 7 weeks + 1 day, and weighing 3.4kg, our brave strong little boy had open heart surgery.

The surgery went very well, the surgeon was able to save his pulmonary valve, which is rare for TOF repairs, and his oxygen saturations have been 100% ever since. Louis was finally discharged home 10 days after surgery, and has since been having regular follow up appointments monitoring his heart. It is very likely that he will need further surgery in future.

Evelina London saved our sons life, and continue to provide outstanding care for him. They made what was the hardest time of our life, that tiny bit easier, because we knew our son was in the best hands possible.

Throughout our stay in hospital, ECHO was a huge support for not only us but all the heart families. They had a weekly trolley on the ward with drinks and treats, and most importantly a listening ear. They made a fuss of Poppy, and gave her craft packs and local museum passes to keep her occupied during such a turbulent time for her too. They provide a platform for heart family’s to connect, something that I have found valuable ever since Louis’ diagnosis.

British heart foundation are the biggest independent funder of heart and circulatory research in the UK. They’re actively helping to find cures and treatments to give people more time with loved ones. 

And that is why we’re running and fundraising. There really will never be enough words to express our eternal gratitude. But we hope you will support us, to enable these charitities to continue to support families like us, through the hardest time of their lives. Thank you x