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Ethan's story

19th December 2017

Maria’s son Ethan had just been born when he began to show signs of being unwell. Here, the mum from Forfar, Angus in Scotland, bravely tells their devastating story

Ethan's story

“Towards the end of my pregnancy I became very unwell. I had a very high temperature and was being sick constantly.

I had been getting contractions throughout my pregnancy, and I became so unwell my partner had to leave work to look after me. I was so unwell they decided to induce me three weeks early due to the severity of my contractions.

“I was so scared when I was told I was being induced and didn’t know what to think or what would happen, but it was the worst labour I’ve ever suffered yet, and the pain was unexplainable.

“I did it and got through it with my partner who supported me the whole time. When my son was finally born at a healthy weight we were taken to a side ward in the maternity unit -that’s when everything changed.

“I had to be given strong antibiotics due to the flu that made me very poorly, and I noticed while changing our son that his breathing seemed unusual and rather rapid. When the nurse came over I mentioned his breathing, so she had a look and agreed Ethan was struggling to breath and called for assistance. He was rushed to ICU at Ninewells Hospital.

“We were told that when Ethan was stable we could go see him. Waiting for that call was only a few hours, but it felt like days - sitting with my partner and worrying, wondering if our little boy was going to be ok. Eventually we got a call that we could go and see Ethan. We went to see him not knowing what to expect.

“He was in an incubator and had been stripped down with a feeding tube in his mouth. He was at this moment in time able to move around a little, but as days went by our little boy didn’t seem to get much better. Little did we know this was just the start of our nightmare.

“After a couple of days in ICU, Ethan then started not being able to take his feeds and turned very pale as he struggled to breathe even more. He wasn’t coping with the little oxygen he was given, and started not moving much at all. The doctors decided to do some tests to see what was making Ethan so unwell, as they had been treating him for an infection that they thought he had, but he wasn’t getting any better.

“It turned out Ethan had viral meningitis that had attacked his heart muscle, therefore his heart was unable to work properly and he was unable to breathe for himself. His feeds had to be stopped and he was deteriorating, so Ethan was transferred to Glasgow’s sick children hospital.

“Ethan was taken to the high intensive care unit as he was so poorly, and at this point we knew he had a 50/50 chance of survival. They had to sedate him and give him various drugs to keep him alive and breathing, but also to keep him numb so he wasn’t in any pain. At this point me and my partner were devastated - me being ill during my pregnancy resulted in Ethan contracting viral meningitis, which had spread through his body and heart.

“Hours went by and the consultants explained that Ethan was extremely sick and that his heart wasn’t pumping the way it should be, so they had put him on a life support machine. We were warned to expect the worse. As we entered the ward to see our boy my partner held my hand tight and told me we were going to be ok, and we needed to be strong for Ethan.

“I wiped my tears away as we arrived to the unit Ethan was in. We walked in and I told him we loved him very much and that we were so sorry for him, and won’t ever leave his side. I was in such a state. Later that day they had to sedate him more and up his drugs, which made him sleep. There were days and nights where we were told to prepare ourselves for the worst, as it didn’t look like Ethan was going to survive this awful disease.

“Me and my partner by this point were just so drained and worried sick about Ethan - he was doing good some days, yet still had his bad days. At one point the consultants even thought that half of Ethan’s heart had repaired itself, yet how wrong they were - Ethan wasn’t getting any better he was getting worse.

“Whilst being in Glasgow, Ethan contracted another infection due to the tubes not being changed. Because of this they had to give him steroids and antibiotics, but unfortunately he wasn’t strong enough to fight it and just became sicker. The truth was he wasn’t getting any better and was deteriorating rather fast. Although that’s not what we wanted to hear, we had to accept it.

“We wanted to give our boy the best chances in life, but his body had enough and was letting us know he couldn’t fight any longer. The consultants spoke with myself and my partner to explain our options due to Ethan being so sick and critical. Our options were all just awful, nothing any parent wanted to hear.

“Our only options were to send him to Newcastle for a heart transplant, where it would be very, very unlikely there would be a heart his size for such a tiny sick baby like Ethan, and even if there was they didn’t think he would survive the operation, and would become more sick and continue to be in pain.

“Or we say our goodbyes in a family room holding our boy and cuddling him, and they put him to sleep in a nice calm environment, or we wait until he passed. We both spoke about our options for a couple of hours and decided that as heart breaking as it was, the best thing for our little boy was to let him rest in peace in his mummy and daddy’s arms, and take the pain that he had been suffering for five weeks away from him.

“The next minute a nurse came in and explained the procedure of what was about to happen. After the removal of his tubes, they put us in a family room and brought our Ethan through to us with only life support keeping him alive. After some time spent with Ethan saying goodbye and telling him we loved him and how proud we were of him, we held him tight in our arms and told him everything was going to be okay.

“Then it was time for the consultant to inject Ethan with pain relief, and then remove his life support. Minutes later our gorgeous little Ethan rested at peace in his mummy and daddy’s arms. We were absolutely devastated and heartbroken; no words could ever come close to the pain we suffer every day. The day we held our son’s coffin and walked down the aisle to say our final goodbyes was one of the most horrific experiences ever.

“Ethan was one very loved and special little boy and will always be missed. My partner and I are very grateful and thankful for the amount of support from both of our families, if it hadn’t been for them we have no idea how we would have coped. To this day it is torture, but we get through it for each other and our little boy, who will be looking down on us wanting us to keep strong and help us to get through this.

“The loss of our son due to meningitis has absolutely destroyed me and my family, I don’t think this is pain that will, or could ever go away. My family are trying to stay strong for me and my partner, but they’re suffering too. Meningitis changed our lives overnight and it’s like living in a nightmare that will never go away.

“It’s changed me and my partner as people and made life itself difficult. We have both been struggling with sleep problems and depression since the death of our boy, but only now eight months on, have we both started to find ourselves a little again and feel like a normal couple.

“Meningitis killed our little boy, and took away our gorgeous, precious, little bundle who we were ever so excited to meet and extend our family with. Without the support of our close friends and family, I’ve no idea how we would have come through this to where we are today. This has had a massive impact on us and something that will never leave us or fade away.

“Each day it gets harder and the pain fades for a little bit but comes back again, and I just sit and cry and wonder why this happened to us. But I remember that my little boy wouldn’t want us sobbing in pain, he would want us to be happy.

“This has made me see life from a different perspective and realise how lucky we are, and to appreciate what we have and the people we have. Our love for our boy will never go, and we cherish his memories. What we can do now is help someone else so they don’t suffer like we did. Something needs to be done to support parents with a loss from meningitis and more awareness is needed.”