‘Losing my precious baby inspired me to want to help other families’ – teesside live

New Year’s Day 2015, a day which would change the course of our lives forever. After a very normal and healthy twin pregnancy, I was woken up thinking I had spilled water on the bed in the early hours. It was then I realised my waters were going. I was only 21 weeks pregnant. I had felt fine and had no reason to believe I was unwell or had any sort of infection. The doctors told us that night there was an 80% chance of delivering my twins and if I did, they would not be viable. We waited, we hoped, we prayed. Thankfully both our boys stayed put.

Weeks went by of checking my temperature every four hours, writing it down, attending the hospital twice a week for tests to see if there were any signs of infection. It was then I was diagnosed as having an infection which could cause miscarriage, premature birth or neonatal death.

Sadly, by this point, and unbeknown to us, the infection had taken over my entire uterus.

At 24 weeks, I had started to go in to ‘labour’ at home. It wasn’t your typical labour; I had a handful of contractions, but I knew something wasn’t right. Upon arrival at the hospital, we were told his feet were hanging out and he had begun to deliver himself. The doctors took bloods, and within a matter of hours I was hooked up to all kinds of antibiotic drips as my infection markers went through the roof and the main concern was now to save me. Throughout this, I felt fine, not under the weather in the slightest, and of course, pleaded with the doctors to save my babies. To me, their lives were more important than my own. I could not imagine a world without them.

On 19 January 2015, I knew it was time. My darling boy had started to make his way in to this world again. Still at this point I had no idea how sick Leo would be, I believed medicine would and could save him. He entered the world at 7.42pm, a time etched in my heart forever. He was rushed to the Resuscitaire with a team of neonatal doctors and nurses frantically working to save him for us. I remember the midwife asking them if I could see Leo, but I knew from the look on the nurses’ faces that it wasn’t OK as they needed to get him upstairs to the Neonatal Intensive Care Unit (NICU) as soon as possible.

Hours went by, and we were joined on the delivery suite by the same nurse and a neonatal consultant. They explained to us how sick Leo was and asked us if we wanted to try experimental treatment on him to try and save his life. Simon and I made the decision not to go ahead with this option. We couldn’t play God, we couldn’t live with ourselves if the treatment saved his life but gave him no quality of life. If he was meant to be here, he would be and whatever the outcome of that – we’d manage. ‘Our first cuddle was our last’

In the early hours, we finally went up to the neonatal unit. I wasn’t allowed off the bed in case I delivered Oska and they wanted him safely in there for as long as possible. The doors of intensive care opened, and there he was, the most beautiful little boy in the world. I fell in love instantly. Our first hello would be our goodbye. Our first cuddle would be our last together in this world.

We made the heart-breaking decision to turn off his life support and let him go peacefully. He slipped away and grew his wings in the early hours after he was placed in my arms. He changed our hearts irrevocably. In those brief moments we shared together, I can’t explain the lessons he taught me, the love I felt and the overwhelming desire as his mum to make sure his life meant something.

Knowing there should have been two babies in there, it felt so empty for both me and Oska. There was this huge void of space in my tummy (literally) and in my heart. When Oska arrived, despite his tiny size (he weighed less than a bag of sugar) he let out a cry. He fought the doctors and manage to extubate himself a few times before he’d even left the delivery room. From that moment, I knew his brother was with him and this tiny little person was full of fight.

Since Oska came home, it’s not been plain sailing for him. He’s had a much tougher time than any of us anticipated. His lungs are in incredibly bad shape as he’s been diagnosed with severe chronic lung disease, obliterated bronchiolitis and severe evolving asthma. Oska spent his first Christmas in PICU on a ventilator up in Newcastle’s RVI where he suffered a cardiac arrest as a direct result of a viral and bacterial chest infection which, once again, nearly cost Oska his life. We’re never out of hospital long with him. He’s been in every month for the last year and has had to be placed on life support twice recently too. To look at him, he doesn’t look unwell, he charges around full of life and is an extremely confident little boy who loves trying new things. You would never know the damage inside of him. All of this, also affected their older brother Dax. At four years old, Dax became consumed with anxiety, afraid of death, leaving the house, even playing in the park. Everything in his world could cause him to die. He went from being a four-year-old to not even being a child any more. He would lash out, his behaviour became extreme and he was getting in trouble at school. It was at this point I made the decision to put him in therapy and realised that not just losing Leo, but everything Oska had faced and was facing was having a significant affect on him. On top of that, he saw me fall apart no matter how hard I tried to keep it all together. After several months in counselling, my little boy returned. He’s still anxious around certain things now but him and Oska bring out the best in each other. Dax teaches Oska to be more careful and Oska teaches Dax that going down a slide head first doesn’t (always!) result in a head injury and it’s fun. Leo’s legacy

It was taking all of the experiences of the boys, what I had and continue to face as a mum, to form a well-rounded continuous offer of care for families. There are so many elements to the support they need during neonatal death, neonatal stays, siblings, parents, grandparents, needing paediatric intensive care after discharge, the effects on mental health – the list is endless. “Leo’s” is their legacy.