"An incredible support to us all": Max's story

What started as a seemingly normal delivery for Hannah, quickly developed into a difficult start to life for her newborn son Max. With Hannah’s medical background as a nurse, she knew something was just not right and those fears were confirmed when they found an enterovirus infection, putting Max’s heart and brain at risk.

Max’s troubles proved to be a tumultuous experience for the Leedham family which saw them transferred from hospital in Brighton to Evelina London Children’s Hospital, where they were accommodated in our Ronald McDonald House for 36 nights. The House prevented the Leedhams from facing a “financially impossible” scenario and provided Hannah and her family with a network of support while being in close proximity to the hospital during Max’s treatment and recovery.

Guest Blogger: Hannah

Max was born at 38+5 weeks gestation. We had a very normal delivery, and all was well initially. However, 12 hours after Max was born, I began feeling unwell so we were both started on intravenous (IV) antibiotics. Two days later, Max started making a grunting sound and just didn’t seem quite right. He was taken up to the Neonatal Intensive Care Unit (NICU) where he was monitored for 24 hours and treated for an infection.

The following day, Max seemed to have turned a corner and we were ready to be discharged back to the postnatal ward when Max suddenly started experiencing seizures and seeing a spike in temperature. After multiple tests including brain scans and a lumbar puncture, we found out he had enterovirus, which can affect the brain and the heart. Max was hooked up to brain monitors but after 48 hours they were happy his brain was unaffected.  

A few days later his breathing became laboured, his oxygen kept dropping and he was needing more support. He was on breathing support and an echocardiogram, or ‘echo’, was done, which showed myocarditis. Max’s heart wasn’t functioning properly and had some inflammation.

When Max was 10 days old, we got a call to say they wanted to transfer him to Evelina London Children’s Hospital. We were taken to London by ambulance and at 4am the following morning we got a call to say he had deteriorated further and needed to be ventilated, so we all rushed to be with him.

Worried about where we would stay when our baby was so sick, we were offered a room at the Ronald McDonald House Evelina London. This was such an incredible support to us all. My other son, Louis, was separated from us so this allowed him to come and stay with us at the House at weekends.

Over the next six weeks, our little Max was ventilated for three weeks, suffered two cardiac arrests, had chest drains, blood transfusions, endless IV medications and blood tests. But against all odds, he survived, and we were able to take him home at eight weeks old. 

Over the 36 days we stayed at the Ronald McDonald House, we were provided a place of comfort where we could go and get some rest knowing we were right next to our baby. We will be forever grateful to such an incredible charity. Seeing the impact of the Charity, my Mum has since gone on to do a sky dive and raise more than £2,000 for Ronald McDonald House Charities UK. Just a small thank you from us and we intend to do more fundraisers in the future.