We were enjoying a family day at the beach when I noticed that Cohen didn’t seem himself. He was a very quiet baby so when he started to make painful groaning noises, I quickly thought something wasn’t right. He had also been suffering with diarrhoea and severe vomiting, so we already suspected he had an allergy to cow’s milk. I was unsure if the pain he was experiencing was due to these other symptoms, but he seemed ten times worse than usual.
He wasn’t feeding as much as usual either and kept having long pauses where he would completely stop breathing for up to five seconds at a time. That’s when the alarm bells started ringing and I knew he needed to go to hospital. When we arrived at A&E at Basildon Hospital Cohen also had a high heart rate and temperature as well as being floppy and lethargic. He was immediately seen by the doctors who gave him a lumbar puncture and medication via a canula. He was admitted to the neonatal intensive care unit (NICU) where we spent the night waiting for his test results. In the early hours he was put on an oxygen machine and by the morning he needed optiflow breathing support. I was incredibly worried, becoming even more so when the gaps in his breathing increased to 15 seconds. Between these pauses his breaths were becoming shorter. Cohen was clearly not taking in enough oxygen for his body, being diagnosed with breathing apnoea.
He was placed on a strong cpap breathing machine, but it wasn’t having the desired effect and there was no clear sign what was causing him to struggle so much. With Cohen not improving the decision was made to put him on a ventilator, which is when the panic really set in for me. I couldn’t help but fear the worse for my son. Getting ventilator set up seemed to take forever, but once Cohen was stable I was told he being transferred to the Royal London Hospital for specialist care.
“I was scared being in an unfamiliar place, but Stevenson House was such a comforting and warm environment to come into.”
Being taken to an unknown area made everything more daunting, but Cohen desperately needed specialist help. After being admitted to the Royal London, Cohen’s results came back and revealed he had meningitis cells in his lumbar puncture as well as enterovirus and rhinovirus. It was all becoming very clear why he had got so poorly. Cohen also had an MRI scan which showed he had ventriculitis, a swelling of the cerebral ventricles caused by the meningitis. If that wasn’t enough, his eyes were also shaking constantly due to the trauma he had suffered, affecting his brain signals. It was an extremely hard time and in that moment you don’t know what to think.
It broke my heart to leave Cohen at the hospital, but with parents unable to stay on the intensive care units I didn’t have a choice. Thankfully they told me I had a place to stay at Stevenson House which is located just a two-minute walk from the hospital. I was scared being in an unfamiliar place, but Stevenson House was such a comforting and warm environment to come into. I found out the next day it’s ‘Home from Home’ run by The Sick Children’s Trust, giving families with a seriously ill child in hospital a place to stay nearby, completely free of charge. It was a massive benefit to me, and without The Sick Children’s Trust I wouldn’t have been able to stay with my son during such a scary time. It had everything I needed, including washing machines, dryers, a full kitchen, dining area, lounge and bathrooms for me to use. I felt safe at Stevenson House and that’s important when you are somewhere so far from home.
Cohen had a hard time cannulating, something which caused his veins to collapse. He was so bruised and sore, it was really hard to see him like that. As his recovery continued, they tried to reduce his dependency on life support, but the pauses in his breath returned, setting him back. At one point I questioned whether he’d ever come off the ventilator. I was told that they could not promise Cohen would make a full recovery and that it was possible he would have brain damage.
However, Cohen proved to be a fighter and he is now thriving. He’s shown no signs of any further brain damage and, so far, he is advanced in everything he does. He even started trying to crawl at just five months old! He still goes to physiotherapy as he tends to use one side of his body more than the other, but Cohen continues to show massive improvement every day. Hopefully in time, everything will be a distant memory. He really is my little miracle.
I thank Royal London Hospital every day for saving my son’s life and I thank The sick Children’s Trust for making sure I could be there for my son. All the staff at the charity are a huge part of our journey and they deserve as much recognition and praise as possible.
Ellie Cummings, Cohen’s mum
