Archie was born on Saturday 25th March 2006 after a normal pregnancy and weighed a very healthy 8lb oz. He was born with ‘Talipes’ which basically meant that his right foot was pretty much at right angles with his leg.
After a few days and various checks we were given the all clear to go home.
The first 6 weeks were fairly uneventful in the grand scheme of things, I noticed that his hands and feet were always cold but other than that we had a perfectly healthy little boy.
I took him to the doctors for his 6 week check and everything seemed to be OK. 5 days later I took him to the clinic to be weighed. My health visitor noticed that he was looking a bit ‘dusky’ and asked me to take him straight to the doctors surgery. When I arrived Archie was examined by the doctor who told me that he seemed to have a ‘slight heart murmur’ and advised me to take him to my local hospital. He gave me a letter to take with me so I left, went home and fed Archie then took him to hospital.
They hooked him up to a machine to measure his stats and after several checks they were confirmed at around 30% (originally the nurses thought there may be a fault as the reading was so low). At this time I still didn’t know just how poorly Archie was. We were taken to the special care unit and told that a retrieval team was being sent to collect him and take him to The Evelina Children’s Hospital where he would have to undergo surgery.
Tim and his team arrived some time around 9.30-10pm to pick Archie up and after moving him to what I can only describe as a space pod we were on our way to London. I went in the ambulance and Paul followed in the car having made it back from Manchester in record time. We arrived in at the Evelina just after midnight and within the hour Elsa was telling us that Archie had Transposition of the Great Arteries (TGA). What made him so special was that he had actually made it to 6 weeks without being diagnosed. (I have since read that if not diagnosed within the first 2 weeks of life 50% of babies die from this condition).
After a couple of hours Archie was having trouble breathing and needed to be incubated. On Wednesday afternoon Dr Miller explained that he would need to perform a Septostomy – a procedure where the hole between the 2 ventricles is made larger in order to help the flow of blood. A canular was inserted via a vein in his groin in order to perform this procedure.
On Friday a PA Banding was performed. This involved opening up Archie’s chest and putting a band around his Pulmonary Artery to restrict the flow of blood and as such cause the ventricle to work harder. This was needed as his heart had been working the wrong way round for 6 weeks and the ventricle could not have coped with the correct flow of blood straight away.
Luckily the operation went very well but it was heartbreaking to see our beautiful baby laying there with his chest open and all the lines going into him even though they were keeping him alive.
His ‘switch’ was scheduled for Monday morning and by Sunday night he was starting to struggle again. Once again, on Monday morning we kissed our little boy goodbye, put our trust in Mr Anderson and his team and hoped for a good outcome.
After what seemed like an eternity Carrie called us to let us know that Archie was back in PICU and we could go and see him. The change in his colouring was unbelievable, he was a healthy pink colour all over and his hands and feet were starting to warm up again!
After a day he was fighting to come off the ventilator and after a total 8 days in PICU he was moved to a ward. In total we spent 14 days in hospital where he received amazing care.
For the 8 days he was in PICU we were given one of the parents rooms on the 1st floor and once he moved to the ward I slept next to him each night.
When we came home and everything had settled down Paul made a promise to Archie that he would raise some money to say thank you for all the wonderful care that he had received. Without Mr Anderson and his entire team our little boy would not be here today.
Paul decided to run the London Marathon in order to raise money but unfortunately was unable to run as part of the Evelina team as all the places had been allocated. Instead he managed to get a place with the British Heart Foundation. He felt that he should run for a heart related charity.
He completed the course in 5 hours 22 minutes on an extremely hot day and managed to raise approximately £2.2K. We had to send £1.2K to the BHF and had long ago decided that we wanted to donate the rest of the money to the Evelina and to ECHO.
The rest, as they say, is history.
We now have a very healthy and very happy little boy who keeps us on our toes every day.
Lisa Wade
