At 23 weeks Johnny was born prematurely – he weighed just 1lb 5oz. After experiencing a little bleed, we called the Labour Ward at Leighton who told us to come in just in case. We were seen nearly straight away, after a quick examination, we were sat down and told that I was 2cm dilated at 22 weeks ….. what did that mean?

We started to cry, the doctors were quiet, yet I still kept asking the same question … what does that mean?! Still nothing …. Just tears. Then it dawned on me that this was it, I was going to miscarry. We were placed on the ward, I was dressed in a gown, and on a bed of basic linen sheets … it was only a matter of time. The midwives & doctors were so kind, and checked on us regularly. We hardly got any sleep, and I daren’t even move a muscle in case I jeopardised anything.

 

The next morning, we were taken for a scan and he was there – a full heartbeat, still going strong! I was transferred to a ward & put on full bed rest, not to move & to keep my waters in as long as I could. The hospital had already told us that Johnny was within the “thresh-hold” so should he come out weak, then they would not resuscitate, but should he come out strong, then they would do what they could. Thankfully, Johnny was a fighter from the beginning. I remember thinking of names – whatever the outcome, he was going to be remembered as the baby boy he was growing inside of me & he was a person, the same little man who had been kicking me, the same little man who I had felt move, heard his heart beat & just been a part of me for the 5 months he had been inside my body. He was called after his Grandads, from my side & from his Daddy’s side. The name was decided – Johnny Alexander Thomas Forbes.

We were hopeful, so very hopeful ….. then after a week, I got up and my waters broke. I was so terrified …… however following that, he still managed to stay inside for 2 more days. We were put in a “special room” which we knew was where they put suspected miscarriage patients – but still we kept our hopes up, I could still feel him moving. The Hospital did a scan and despite no waters he was still going strong….. we were so relieved. We thought we had already lost him but there he was “Our little Man”. Following the scan – that night, I got up to use the toilet and he came out, the emergency cord was pulled and everyone was in the room within seconds …….. then he was born. At 12:05am on May 4th …… my husband said it was a boy, I was so happy. So extremely happy, amongst the pain. I just wanted to see him, but so many doctors blocked my way. I was also haemorrhaging, so as the doctors took Johnny away, I was taken into surgery.

As I awoke, I didn’t know if he was still alive … I was told he was, and I asked to see him.He was perfect, so perfectly formed - “our little man” – little arms, legs, mouth … all moving like they had been just 12 hours earlier in my body. We were in love. People say love at first sight doesn’t exist … but it does. Love at first kick, is even more believable.

He was transferred to Arrowe Park Hospital where he spent 17 precious days. There were so many up’s & down’s, yet we still held on to the hope that our beautiful baby boy would pull through. We were told that he had many complications, it took us a few days to get our heads around the language of the doctors. Neil suggested I take a diary of each day and to this day I still carry it around with me. I can’t let it go. Slowly over a few days, he started deteriorating, then the night before he died I had a dream. I dreamt I was holding him, he was begging me to let him to go to sleep, but I wouldn’t let him as I knew he wouldn’t wake back up, then he went to sleep on my chest and turned into a beautiful necklace. I saw it as a sign. To this day, the sound of a telephone ringing shakes me the core ….. the calls we had to the room were only 2/3 but they were terrifying. Luckily we were based just above the NICU so we could be down in seconds.

I remember the first time he crashed …… I don’t think I took a breath until I got to the NICU door. My heart was in my mouth, I was shaking. We got to him & they were resuscitating, I felt sick. I realised that we could actually lose him, this was it …. But it wasn’t. He hung on. The next day we had the doctors sat us down to advise us that the best option would be to let him go …….. we decided it was. Johnny had already told us he was tired, and he was weak & he couldn’t fight any longer. Before we planned to say goodbye, or change our minds, Johnny crashed again the next day & we told the doctors to stop resuscitating….

On 21st May he passed away in his mummy’s arms. It was the first time I had held him. I got to hold him for as long as I wanted, I got to bath him, dress him and put him down to sleep in a cot. It broke my heart in pieces & I don’t think it will ever be whole ever again.

Following Johnny’s death, he was transferred to The Donna Louise Children’s Hospice in Stoke. We had never heard of this amazing place until Johnny. I remember pulling into the car park for our first visit – the place is beautiful, but I just felt an enormous amount of grief. They looked after him ….. he had his own nursery, his own cot, & soft Disney music playing … he was treated like the proper baby boy he was, or should have been. Even though it was so hard not being able to bring him home, it was comforting to know that he was being taken care of. They offered us counselling, support, even attended his funeral. It just meant so much. I never knew this inspirational charity even existed, and the way they took care of Johnny is something that we will be eternally grateful for. Our Baby Boy, got to be a Baby Boy for a few days at least, & that will forever be etched in our hearts.

Johnny was at The Donna Louise for 3 days, and the family explain what a difference it made to them, “It was the little touches that made a massive difference, he had his own room, it was like a nursery, and we could come whenever we wanted. The staff made up a room for us and the family, and we could all stay if we wanted. It was so comforting; it made it all so much easier. Rather than lying on a slab in the morgue he was treated like the little boy that he was, it was completely unexpected and so amazing.”

Johnny’s family have a message for all the supporters of The Donna Louise, “Your help is bringing light out of the dark; you are helping people who are struggling every day. Without this charity, where would we be? Bravo – keep going!”