I am taking on the 2023 London Landmarks Half Marathon to support King's College Hospital Charity!

This is the story of Leonidas Demetrios Pegasiou.

On Leonidas 20 week scan we found out he had CDH. Initially we didn’t know what it was or what to do . The consultant who diagnosed him wasn’t very optimistic and gave us all sorts of negative outcomes .CDH is a birth defect where a foetus doesn’t grow a diaphragm or has a hole in the diaphragm . This means the contents of the stomach and bowl go up and squash the foetus lungs and push both lungs and the heart over to one side . The lungs can’t grow because there is no room .

Leonidas was under the care of professor kipros nicolaides and his team at Harris birth centre. We returned on the 26th week to see the true extent of his issue . We had a meeting with professor who told us about his new feto trial with moderate to severe cdh baby’s . For us we knew this was the right thing to do and we went ahead there and then . The initial process went great and we was out of there within an hour ! We were scheduled for fortnightly scans to see how things progressed. Feto involves anaesthetising the foetus and doing intra womb surgery on the baby . 

At his first scan we was amazed his lung had grown from around 32% lhr to above 50 ! We were estatic. On his second scan his lhr had dropped down to near enough where we started , so we were scheduled for a scan a week later with professor . This is where we discovered the feto balloon had deflated and we were back to square one . So we opted to go again and remove the old balloon and put a new one . After a couple painstaking hours this was complete .

On 33 weeks his mums waters broke and was rushed to kings college hospital . This was a major issue and the feto balloon was in his throat meaning he couldn’t breathe if he was born . Kings maternity unit wouldn’t discharge her incase she went into labour , and the professor couldn’t do his removal surgery without being in his centre . It took around 12 hours but once the logistics were figured out she went to the professor for removal surgery . This in itself was an issue as the waters had broken and took much longer than usual.

Back in the maternity unit pregnancy slowed down so by day 4 they were willing to discharge mum home , however she and the baby both took a turn and they opted for an emergency c-section . Leonidas was born naturally (without c section )on a theatre table at 15.30 on 28/04/22 weighing 5lbs 6. He was ventilated within 1 minute and was allowed a brief moment of skin to skin with his mum . This is where his Nicu journey began .

He was ventilated and put on sleeping drugs and anti Biotic from birth . On day 5 he had his surgery , which took around 4-5 hours . He had a very large hole and minimal diaphragm so they stitched together what they could , and stitched a animal skin patch to his rib cage . He was then taken back to Nicu until he was 10 days old .

On day 10 he was transferred to hdu where we finally got to hold him ! He was off his ventilator and graduated to a different breathing machine . He kept going from strength to strength and lowering oxygen and pressure .

On day 20 he was transferred to Scibu at kings college being on only minimal oxygen threw a canula . We were then transferred to our local hospital to establish feeding . On day 35 after 2 sleep tests we were finally discharged home !

We went home on 2 different reflux meds and vitamins. He came off all of these by 4/5 months old and is now establishing eating food . We have regular check ups with our surgeon and consultants but Leonidas is doing great !

He has been on holiday ( after doing a oxygen depravation test ) , he goes swimming every week and sensory . Looking at him nobody would ever tell . He is a warrior !