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Luke H’s story

11th October 2017

Holly’s son Luke was born prematurely and sadly lived for just 12 weeks. Holly, from Corby in Northamptonshire, tells their sad story here

Luke H’s story

“My baby boy Luke was born prematurely at 31 weeks.

I went in for foetal movement checks as he wasn't himself that day and they decided to deliver Luke immediately as he was in distress.

“He needed ventilating and antibiotics for possible sepsis. Luke remained in hospital for eight weeks and progressively got better and gained weight. A week before our due date he was allowed home.

“Once Luke was home he had his vaccinations, including for MenB. He seemed fine after the 48 hours passed. However, on the Sunday evening we noticed Luke didn't want his normal evening bottle. As he was premature he slept a lot as part of his normal routine so we didn't notice anything else.

“We kept trying to get him to drink through the night but he didn't seem too fussed. Previously we'd been told his eating habits might change once he was home, so we didn't want to get too concerned. I knew I had an appointment with our health visitor the following day so I would bring it up then.

Seemed a bit vacant

“The following morning he still didn't want much milk but he was waking up. However, he seemed a bit vacant and his eyes didn't seem the same.

“Once I got him to the health visitor I explained what I'd noticed and she seemed concerned he was cold, he never once had a high temperature – just the opposite. When we undressed him to be weighed we noticed there were two red dots on his tummy and his nappy had blood, so we were concerned he had an infection. He was quick to be admitted to hospital and his vacant glares seemed to be more common and the doctors seemed concerned they were seizures.

“His temperature still didn't stabilise once he was prescribed antibiotics. They gave him medicine to subdue the seizures but it seemed to just hide them and his heart rate seemed to show he was still having them.

Prepare for the worst

“Our local hospital put a call to the closest intensive care unit to make a bed available for Luke as he was rapidly declining. A CT scan here showed Luke had fluid around his brain and he would need to go to Nottingham, which is a specialised brain hospital.

“A lot of work went into transferring Luke to Nottingham for him to receive procedures to drain the fluid from his brain but we were told to prepare for the worst as his tiny body was full of infection. We had him baptised there at his bedside.”

“An MRI scan showed Luke to have suffered brain damage. However, there could still be some hope. He was breathing well against the ventilator so we asked for it to be removed and then if his lungs were too weak then not to resuscitate. Our baby boy had been through enough.

Fought through the night

“Luke fought through the night and doctors continually tapped his brain to help with the pressure. However, we were then told his brain damage was likely to be significant and because of his tiny weight and age he wasn't likely to survive. Test results came back to show he had ecoli meningitis in his brain and spinal fluid, which caused his body to be rife with infection.

“Doctors persevered with antibiotics and eventually Luke's CRP went from 800 down to a 6. He'd beaten the meningitis.

“However, the damage it had caused was irreversible. Once Luke was able to have feeds again he passed a considerable amount of blood in his nappy and doctors advised us this was a sign of organ failure. He'd gone yellow and his bilirubin was high. His fight was nearly over.

Stayed by his side

“We were able to stay by his side the whole time he was in hospital, which was nine days in the end. Luke's big brother Leo came and played by his side and gave him cuddles. Then we were able to gain a few precious hours with our baby boy just mummy and daddy before he finally took his last breath. He'd finally had all his lines removed and we cuddled him all day. It was at the moment we put him back in his cot to go for a toilet break that the nurses said to us he was ready to say goodbye now.

“We held him in our arms and said goodbye, our little boy fighting to the end. His heart was so strong that we offered to let him donate it but he was just too small. Luke gained his angels wings at 6pm on Wednesday 17 May 2017. He was exactly 12 weeks old and what would have been two weeks after his due date.

“We were told his prematurity would have been the underlying condition which left Luke so vulnerable to meningitis. He didn't show any typical symptoms as he was so young and small. He slept a lot and never had a temperature. Lack of appetite we were told could have been normal. We were devastated that we feel we didn't do enough or get him to the hospital on time."