Mother Shelby tells his story here.
“My beautiful son, Daniel – Danny to us - was born on 5th August 2014. He is our third child, with a brother, Ethan, who is 26 months older than him and a sister, Lucy, who is 11 months older. Needless to say, it's a very busy household!
When he was four days old, after we’d noticed that he was feeding very poorly and also not waking for feeds, we insisted that the midwife see him in the weekend clinic. She shrugged us off, saying that Danny was fine, but we were very pushy and insisted on seeing a doctor.
Thank goodness we did. We were sent to the NICU, where they found he had a fever. Then a series of tests were run, and a few days later they discovered he had a UTI, caused by e-coli and a very rare full-term intraventricular haemorrhage. This led to hydrocephalus, and after a nine day fight for his life, our son was transferred from the wonderful care of the NICU at Sunderland Royal Hospital to the Royal Victoria Infirmary in Newcastle.
On 28th August 2014, Danny had a reservoir (half of a shunt) placed in his brain, at less than a month old. We were able to bring him home on 1st September 2014. Though he didn't seem "right" somehow, we were reassured by the A&E department twice that he was okay. We weren't, however, reassured by my son’s neurosurgery team, as they discharged him home without follow up.
On 12th September 2014, our lives were changed forever. Danny wasn't feeding very well that night and he wasn't settling. We decided to take him to A & E. In the 20 minutes to get from our house to the hospital he became very ill. That was the start of our very long and tumultuous journey."
Our worst fear became reality
“Our worst fear became reality when we arrived and Danny was put on oxygen and taken from us into a back room. His surgical incision was leaking spinal fluid.
We were finally allowed to sit with him in the little room, where they told us we'd be transferred via ambulance to the RVI. Once we arrived there, it was determined that there was an infection in his reservoir. The next day though it was somewhat danced around. We were told a confirmed diagnosis of staphylococcus meningitis caused by the bug staphylococcus capitis. It didn't look good, however, he was never transferred to intensive care.
Danny's fever stayed around even after five days of antibiotics, so our worries increased again. On top of his diagnosis, we let the neurosurgery team know that we felt it was neglectful to not provide follow up.
We also had our other two young children at home, which meant dividing a lot of time; me staying at the hospital with Danny and his dad, Andrew, going home with our other children. This meant taking a lot of time off work.
We were discharged home on oral antibiotics after two weeks, and stuck to the strict regime, despite having many appointments in the following weeks."
So very happy and loving
“Daniel is now nearly 11-months-old. He has just started crawling and babbling. He is so very happy and loving.
He is the glue of our family and we're so thankful for him every day. Not a day passes that I don't think of all he's been through, and I proudly tell anyone who will listen about his journey and his battle with meningitis.
The nurse told us that had another 20 minutes passed, Daniel would've been dead. I'm not sure how, at just six-weeks-old, he beat meningitis with hardly any symptoms. We are the lucky ones.
I visit the Meningitis Now website daily and take comfort in so many of the stories. I often want to reach out, to talk, but feel a bit strange, as so far my son hasn't many ill effects and he has survived.”
