At our 20 week scan we was told that baby’s heart wasn’t looking the way that it should.  We was sent to St Thomas’s Evelina for a cardiac scan focusing purely on baby’s heart. After the scan they was able to confirm that our baby had a heart condition called truncus arteriosus. 🫀

They explained that it is a rare condition where instead of having a separate pulmonary artery and aorta, our baby only has one great blood vessel (trunk ) leaving the heart. The result of this heart condition is that too much blood is going to the lungs and not enough blood is reaching the body. We was told that our baby would need life saving surgery within the 1st weeks of  life.

At 8:16pm on the 19th of January our beautiful baby boy Phoenix was born. 💙  We was allowed to spend around 20 minutes with him before he was taken to NICU. . 

Phoenix spent less then 2 days in NICU before being transferred to the sky cardiac ward.  We was able to spend 2 weeks with our little warrior ( individually as due to covid only one Parent was aloud on the ward at a time ) before his surgery date of the 1st of February . Phoenix needed extra support with breathing  and feeding which was all expected with his little body working so hard. 

1st of February. ❤️‍🩹🫀We was able to spend time together as a 3, for the 1st time since birth, before Phoenix’s surgery. We was told his surgery would be 5 HOURS and that the surgeon would phone us after to let us know when we could see him in PICU. After a long day and almost 7 hours  later we got the phone call. Surgery was a success and we could see Phoenix in the next couple of hours. 

Although we had both seen pictures , I don’t think that anything can prepare you for the reality of seeing your baby hooked up to multiple machines and their bodies full of wires and tubes. The nurses in PICU took the time to explain what everything did and once we realised the purpose of each individual thing everything seemed a little less scary. Phoenix had a rough start to his recovery and struggled for the 1st 48 hours, they explained that Phoenix spent a long time on the bypass machine so his body had taken a huge hit after surgery. But each day we saw small improvements That gave us hope. 

Phoenix spent 10 days in The intensive care unit . Then we went back to the sky ward for recovery. On the 21st of February we was able to take Phoenix home. 

Each day is a blessing and Phoenix has showed us the definition of a warrior! We know that Phoenix will need more surgeries in the future as his heart grows but for now we are enjoying spending time together as a family and getting to know our little fighter ❤️ 

We are organising a charity fundraising event on the 20th of august 2022 and will be splitting the funds between  2 amazing charity’s. 

There is no amount of words that can explain how grateful we are to have our little pheonix with us today all thanks to the evelina London and there amazing team of medical staff. Phoenix spent his first 6 weeks of life in Evelina London And received care from all departments including the amazing team of paediatric nurses and cardiologists on the sky ward, the surgical team, and the outstanding team in the paediatric intensive care unit ( PICU ).

And we couldn’t of possibly done it without Ronald McDonald house London. While Pheonix was in hospital my partner and I stayed no more than a 10 minute walk away at the Ronald McDonald house. The house became our home away from home for the 6 weeks that we stayed there. The facilities they have that are available for family’s are endless and if they couldn’t provide something for us they would always point us in the right direction. It was an instant uplift in our spirts from the second we walked in there. The whole Ronald McDonald team was welcoming and supportive to us both. The team and the other families that we met there became like our own, at a time in which we needed it most. 

DISCLAIMER- EVEN THOUGH THIS PAGE IS SET UP FOR RONALD MCDONALD  HOUSE THE FUNDS  WILL BE SPILT EVENLY BETWEEN RONALD MCDONALD HOUSE & EVELINA LONDON CHILDREN HOSPTIAL - SEE  PHOTOS FOR EVIDENCE OF THIS.