Parents warn others after baby died from Strep B
Tim and Hannah Taylor-Smith lost Zachary in November 2022 from a condition called Group B Strep (GBS) just 14 hours after his birth at the Royal Derby Hospital.
An inquest last year heard neglect had contributed to his death, and the trust which runs the hospital said it was "deeply sorry".
Now Mr and Mrs Taylor-Smith, from Lichfield in Staffordshire, are working with the hospital trust to improve how it works with families as well as fundraising for a related charity.
GBS is a bacterial infection found in the vagina, rectum and bowel in 20 to 40% of women.
GBS only presents a risk when passed to a baby around the time of labour, but as carriers have no symptoms, it can be difficult to spot.
Chesterfield Coroner's Court was told Zachary was born at 36 weeks after his mother was induced because of recurrent asthma attacks.
The inquest had heard he was initially healthy, but deteriorated.
Midwives previously told the inquest "incorrect" actions were taken and that it was an error that Zachary was not reviewed by the neo-natal team.
University Hospitals of Derby and Burton NHS Foundation Trust (UHDB), which runs the hospital, admitted that had antibiotics been given to his mum before his birth, or if Zachary had been treated for infection after birth, his death from Group B Strep could have been prevented.
Hospital trust 'deeply sorry' over baby deaths
'Total failures' in care of baby who lived 14 hours
Midwives apologise at baby boy's inquest
'Strep B infection nearly killed me and my daughter'
Mr Taylor-Smith told the Local Democracy Reporting Service more needed to be done within the healthcare sector to increase knowledge of the infection.
He said: "There is quite a lot [of information] out there, but for me personally, the issue surrounding it is those in the hospital profession seem not to think it is a viable thing to bring to the attention of those who are pregnant.
"We were not told about the risk of Group B Strep, and knowing about it could have been a different story.
"There are so many things in the pipeline which will help raise more awareness. From raising our story, we've had so many people reach out to thank us because it has helped them."
Mr Taylor-Smith took part in the London Landmarks Half Marathon earlier this month with the Group B Strep Support charity, raising about £16,000.
Sarah Noble, director of midwifery at UHDB, said: "As part of our commitment to improving maternity services, we want to ensure we continue to involve families and our communities in the changes we are making.
"We remain deeply sorry for what happened to Zachary, and we truly appreciate Hannah and Tim's openness, bravery and support in choosing to work closely alongside our teams – including sharing ideas for potential staff training and how we can best use the experience of families – as part of our improvement programme."
Follow BBC Derby on Facebook, on X, or on Instagram. Send your story ideas to eastmidsnews@bbc.co.uk or via WhatsApp on 0808 100 2210.
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