Max’s Story

Max’s ecmo story

Max’s story started on 1st February 2024, when he was taken to A&E with trouble breathing, before being quickly escorted to resus where he was given oxygen. It was a long day of treatment to no avail, before the decision was made to sedate and intubate for further help with his breathing in intensive care. This also meant being moved to Queens Medical Centre in Nottingham as our local hospital in Mansfield do not have a children’s ICU.

A stressful few days passed and Max seemed to be responding well so extubation was initiated. Unfortunately however, he quickly declined so was re-intubated and sedated as we simultaneously found out he had influenza A. After being moved into quarantine for further treatment, his breathing was still not getting any better. After a few different forms of ventilation, an x-ray showed a pneumothorax, a hole on his lung, which had lead to serious surgical emphysema. Max’s lungs were no longer capable of keeping him alive, so the doctors sought help and advice from other colleagues, respiratory specialists and consultants. This is when we first heard about the world of ECMO.

As all of the readers of the newsletter will know, ECMO sounds incredibly scary and we were petrified when meeting with the team of specialists. Max was put on the ECMO machine on the 12th of February 2024 and transported to Leicester Royal Infirmary with the fantastic Comet team. The ward team were wonderful - every nurse, carer and consultant was amazing and helped us understand everything that was happening to Max.

During Max’s treatment, we were pleased to assist with Max’s daily care (something we really enjoyed), but we were also encouraged to take time for ourselves, knowing Max was in the best care possible. Heart Link kindly provided us with a room at the Brooklyn Hotel next to the Leicester Tigers ground, which made for a much more comfortable stay, especially considering Max’s mum, Danielle, was 36 weeks pregnant at the time.

Max responded incredibly well to ECMO and his eyes opened for the first time in weeks, albeit only occasionally. He was taken off ECMO after 5 days and following a stable 24 hours we were back on board with Comet and heading closer to home back at Queens. The nurses at Leicester couldn’t have been better, even going above and beyond by celebrating Danielle’s 30th birthday with a cake and decorations at Max’s bedside.

A few more weeks in hospital followed for Max as he was weened off sedation and a respiratory physio programme begun. He relearnt walking and talking as his strength grew each day. His breathing support went up and down as we started to see Max’s character reappear - the occasional smile reminded us (if we ever needed it) just how incredibly brave our beautiful boy was being. Max was showered with gifts, cards, balloons and cuddly toys, but it was during these first few days back at Queens when Max was given his favourite gift of all - his baby brother, Otis.

Over the summer, as Max’s health slowly improved, he has grown into the best big brother anyone could wish for. He was also the ring bearer at our wedding in August, a responsibility he thrived upon and carried out in his own cheeky way.

And now we’ve seen him heading off to primary school where he is in his absolute element with his other nursery friends, coming home every day with that incredible smile and many stories to tell - he’s even told us he wants to be a Doctor when he grows up! We’re now living our life to the fullest with our perfect little family - a life that without the incredible ECMO team, might have been completely different.