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We would like to share with you our story about our beautiful boy Jacob, who was born Friday 29th December 2017 at 24 weeks + 2days gestation.

In the early hours of Christmas morning, I was feeling unwell with tummy pains. We called the hospital and they asked us to come in to check everything was still OK. From this point onwards our lives would never be the same again.

We were told by the doctors that I was in pre-term labour. Adam and I looked at each other in utter disbelief and had to ask what this meant. I remember asking the doctor "does this mean I will have to stay in overnight?" At this point in time, I was 23 weeks + 5 days gestation.

I was taken to the nearest level 3 hospital for Neonatal Intensive Care (William Harvey Hospital, Ashford, Kent) so that when Jacob arrived, we were in the best possible place to give him the greatest chance of survival.

I was given steroid injections to improve Jacobs lungs and magnesium sulphate to improve his brain. The steroids had to be in my system for a minimum of 48 hrs and anything after that was a bonus. The aim at this point was to keep Jacob inside my tummy for as long as possible. The birth viability gestation is 24 weeks, so anything under that, they would not resuscitate.

The day before I gave birth to Jacob, Adam and I were given a booklet which explained that Jacob only had a 50% chance of surviving birth and it gave us options of what type of care we would want for him. Intensive Care, Comfort Care or Trial of Treatment (a mixture of both). We chose Trial of Treatment to give us some control over Jacobs care. It is not always about babies surviving, it is about their quality of life which Adam and I feel is equally as important.

I went into active labour 28th December and gave birth to Jacob on the 29th December. Jacob had survived labour! Phew!! I don't think anything can quite prepare a mum for your baby being whisked away from you and the long wait that follows before you can see your baby. Luckily the steroids had given Jacob the head start he needed. He was breathing when he arrived and they managed to stabilise him.

The week that followed Jacob went from strength to strength. He was fighting for his life and the nurses, doctors and consultants were incredibly pleased with his progress. We were so proud of our beautiful boy. He was on a ventilator but needed very little Oxygen and was breathing normal air majority of the time. They told us that they had never seen a 24 week baby with such strong lungs. We took every day/hour as it came and although we were exhausted, we were so happy to see Jacobs little face every day.  We changed his tiny nappies and washed him in his incubator.

The NICU (Neonatal Intensive Care Unit) at William Harvey Hospital is truly outstanding and we were able to visit Jacob 24 hours a day. We spent our days reading stories to him and generally talking to him as our voices would've been a comfort. Although staff would try to keep the unit as quiet as possible, it is still very noisy with all of the machines bleeping etc. We always felt very sad leaving him but we would call before we went to sleep, in the middle of the night when I was expressing milk and as soon as we woke in the morning to check his progress and if he was still ok. There was always a nurse with Jacob, 24 hours a day. The care was absolutely amazing.

On Saturday 6th January 2018, Jacob started to become a little bit poorly. He stopped tolerating my milk and his blood gases were showing signs of infection. On Sunday he was stable but was still not tolerating milk and infection markers were going up slightly. The doctors weren't overly concerned at this point. We called the unit before we went to bed that night and the nurse said that he was fine. He was breathing air, he wasn't on morphine and was settled for the night.

At 4am on 8th January 2018, we received "the call" that all parents fear. Adam was told that Jacob had a large bleed on the brain and we should come to the hospital. Our worst nightmare began.

When we arrived at the hospital we were shown images of Jacobs brain bleed. The consultant explained that the bleed might dissipate on its own as the blood was still contained within the ventricles, so brain damage wasn't a major concern. However, Jacobs infection had got a lot worse and his body was in septic shock. They took blood samples and found that Jacob had a gram negative infection. He was deteriorating dramatically so they gave him strong antibiotics and morphine for the discomfort. There was so many lines going into him for blood transfusions, platelets transfusions (to help his blood clot) and for all his medication. It was heart breaking to see. As a mum, I could tell that he was in so much pain. His little body was jerking and there was nothing I could do to help him. All we could do was hold his little head and hands so that he knew we were there and that he wasn't alone. Those feelings of helplessness will never leave us. They decided to give Jacob a sedation which paralysed him so that he couldn't move and increased morphine for the pain.

Jacobs consultant confirmed that it was looking unlikely that he would survive the infection and asked if we would like to get him baptised.
We had Jacob baptised that day and due to his critical condition we were able to stay with him in the NICU.

The next day Jacob began to show signs of improvement. He was now stable. However, we were terrified that Jacob was still in pain and was unable to show it due to being paralysed, so we requested a meeting with the consultant the next morning.

We listened to the consultant on the ward round the next morning and Jacobs blood gases had improved. He was fighting off the infection and he was turning the corner. Adam and I looked at each other over the incubator with hope in our eyes, "our little boy was going to survive this". As parents you tend to grab onto any glimmers of hope because all we wanted was for our baby to survive and to live a happy, healthy life. We asked the consultant to carry out another head scan that morning so that we had an up to date picture of where we were with his treatment and could discuss Jacobs care and what we could do to save him.

Jacobs consultant explained that the brain bleeds had deteriorated and had become very severe. Although he was fighting the infection, the damage on his brain was already done and there was nothing they could do to reverse it.

Before we made the decision to put Jacob through Intensive Care, we promised each other that we would be strong enough to do the right thing for him. We would not want him to live a life of suffering. We spoke to the doctors, nurses, consultants and our family. We all agreed that the best thing for Jacob was to change his treatment to Comfort Care.

Sadly, Jacob died peacefully in our arms on 10th January 2018. Age 12 days.

We have set up this page to thank the doctors, nurses and consultants in the NICU, who helped Jacob. They gave him the best possible chance of life, supported us throughout this horrendous time and have made this heart breaking process bearable.

Instead of sending flowers for Jacobs service, we have asked family and friends to donate money to this amazing charity, that will always be very close to our hearts.

Thank you, thank you, thank you, to all that donate to Jacobs page.

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