Axel's Fund

Axel very sadly passed away in early 2024. His parents created ‘Axel’s Fund‘ so as many positives as possible can come from Axel’s passing to help other babies recover for a fitting tribute for all the joy he brought to the world in his short time.
‘The teams (and many worked with him) at Royal Brompton were all fantastic, hard working and compassionate, and we’d love for there to be a memory of Axel at the hospital where people can see him helping, even after all that has happened’. Mike and Jean Strevens

Axel’s Story

We are Mike, Jean and Ragnar, and this is the story of our precious second son Axel, born at 15:46pm on 25th August 2023 at St George’s Hospital, London, following a placental abruption. He was 34+2 weeks and weighed 2.34kg, a healthy weight for his gestation and everything seemed so perfect and we were looking forward to life with 2 under 2.
Unexpectedly on day 4 he stopped feeding, we tried every possible means but he was too tired. He was moved to NICU so that the nurses could keep a close eye on him and for tests to be performed to see why he was not feeding.
They found he had periods of tachycardia where the heart would beat very fast for a short period of time. He was moved to the Royal Brompton just over a week later where he could receive more specialised care for his heart. He was the youngest baby on the ward when we arrived and all the nurses were in awe. During his stay he was diagnosed with Myocarditis, an inflammation of the heart, suspected to be caused by a common HFM viral infection.
On the 20th September Axel was doing so well (be it on various heart medication) that he was for the first time able to be discharged for home. We were so excited to bring him home finally and start life as a family of 4. Axel met his closest family members and cousins and everyone was so happy to see him. One of Axels first outings was for his brother Ragnar’s 2nd birthday party at a local soft play, this time meeting all of Ragnar’s friends, it truly was a lovely day. We went on many outings together to cafes, baby sensory with NCT friends, celebrated Mike’s birthday at a lovely restaurant, weekend outings as a family of 4, had our first ever Thanksgiving dinner, Natural History Museum to see the Christmas T-Rex, Christmas gathering with NCT friends, we even had a newborn photoshoot which turned out fantastic!
Ragnar especially loved having his little brother at home, giving him lots of hugs and kisses. He liked to hold him (with our help), would dutifully come running to tell us if Axel was crying, and then suggest that he should stop crying. Axel really enjoyed baby sensory classes, but his favourite spot was snuggled into his mummy, which would guarantee to stop any crying. Mike would also get his chance for cuddles after work when Jean would try to nap, which was Mike’s favourite moments with Axel. Axel was less a fan of bath time however!
On the 6th December we went for a routine checkup back at the Royal Brompton, and we had to be kept in for further tests as Axels heart condition had slightly deteriorated from when he was last seen. He was started on different medications to see if his heart function would improve. After 9 days in the hospital we were allowed to go home with a checkup due in a weeks time. We used this time at home to have more adventures with Axel and Ragnar and we took them to Battersea Power Station to see the Christmas lights.
On the 19th December Axel slept most of the day at home, the next day we were due back at the Royal Brompton for his scheduled checkup and the news was not good. Axels heart condition had not improved and his Ejection Fraction (a measurement of the percentage of blood leaving the heart each time it squeezes), was critically low. The Doctors confirmed that his initial diagnosis of Myocarditis had developed into Dilated Cardiomyopathy (enlargement of the left ventricle), a diagnosis we had been fearing. Once again we were kept in for observation and back on the Rose Ward. The nurses really welcomed us back and Santa and Elf even came to pay us a visit at bedside.
On 23th December Axel was moved to his own room on the Rose Ward, for access to more specialist equipment as he needed a bit of help with breathing. Christmas Day came and we visited Axel in the morning to spend time as a family of 4 and opened up all the presents. It was lovely to be able to spend such a special day together. However as we were planning to take Ragnar home the nurses advised us that Axel was going to be moved to the PICU high dependancy unit that evening. So the 3 of us all went home to have Christmas dinner and Jean returned to the hospital to stay with Axel once he was moved to PICU.
Things really started to take a turn at this point and on the 28th December Axel was really starting to struggle with breathing. The next day we saw the doctors and Axel was to be ventilated, but this came with a risk. If he did not cope well whilst being put on the ventilator then he would be put on an ECMO machine, in other words life support, and this machine is never without risk either. With his struggles with breathing we made the choice to ventilate him, and after what felt like an eternity waiting for doctors to connect him with the machines…the doctor came out after the procedure and said they had to perform CPR and shock his heart back several times…and therefore he had to be connected to the ECMO machine. This was our worst nightmare, we knew the ECMO machine came with risks of blood clots and potential bleeds in the body especially the brain, and most patients don’t go past 5 days of being on the machine before issues start to arise.
On 30th December there was a big meeting with all he doctors who had treated Axel until now to discuss where to go from here. We were called into a room to be given the feedback of how the meeting went, and were told Axels chances of recovery was not in our favour.
On 31st December, Axel seemed to be doing somewhat better than the day before and it looked like his heart had some activity, whereas the day before the ECMO machine was doing all the work. As much as we knew his chances of getting better was slim, we just had to cling on this little glimmer of hope that he was trying his hardest to fight. We spent that evening together and stayed up for the New Years Day countdown and fireworks, and cheers with all the nurses on the PICU ward we were in. We went to bed that night feeling glad we got to spend that evening with Axel.
New Years Day arrived and we were both shocked up by a phone call early morning… a dreaded call from the ward. Axel was not doing well and we were asked to see him as soon as possible. We got ready in record speed, trembling with fear and headed down to the ward. There were so many doctors and nurses around Axels bed trying to help him as we sat a few metres away from the foot of the bed. All we could see was the top of his head. The doctors were trying their hardest and we were told that blood clots had formed in his heart and was blocking blood from flowing waist down. We were able to see him bedside soon after and our world shattered into a million pieces. Our precious boy, our Axel Monkey was dying, we stood by him as the doctors continued but nothing worked, we had to let him go… It was the hardest decision we had ever had to make but we could not let him suffer anymore if nothing further could be done. The doctors and nurses cleared the room and removed any intravenous drips they could and we were able to hold and cuddle him one last time, still living, and warm, as he slipped away..
We packed our belongings in the hospital and left for home later that day, with no baby in our arms. The worst kind of loss that anyone can face had happened to us… the loss of our own child.
We visited Axel a few times at the mortuary after his death and each time he laid there so peacefully, free from pain and discomfort. This was somewhat comforting and we tried to see him and hold him as many times as we could, remembering all the small details.
We found a beautiful location to settle him, a natural burial ground that looks like a meadow. And on 31st January we laid him to rest there with his closest family around. It was a beautiful ceremony and we both wrote letters to Axel and put them into his little coffin, together with our favourite pictures and new clothes and blanket.
To remember Axel and his legacy we organised a big gathering for friends and family on the 4th February where everyone we loved were together.. We had so much love and support around us and it meant everyone was able to talk about Axel in a safe space.
Although our story did not have a happy ending we do want to take this opportunity to thank all the staff at St George’s Hospital and especially the staff at The Royal Brompton for all the care and support you have provided Axel and to ourselves.
To donate to Axel’s Fund please click here.

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