Mum sets up blog about premature baby’s progress
Fran Jones, from Leamington Spa, is urging people to follow her blog: ‘Oliver’s Progress: following the progress of our premature baby’. Oliver was born in May this year, to parents Fran and Paul, prematurely at 25 weeks at Birmingham Women’s Hospital, weighing just 2 lb 1 oz.
The blog was set up by Fran as an outlet for her and also to help others going through a similar journey. At first Oliver, who was transferred to Coventry University Hospital, thrived. But then at seven weeks he became extremely unwell with a serious bowel condition, necrotising enterocolitis (NEC).
Oliver’s stomach had become so distended that his lungs had collapsed and needed a ventilator to support his breathing. He was then transferred to Leicester Royal Infirmary for emergency surgery. His parents were warned that Oliver may not make the journey and his chances of surviving a major operation were slim.
The children’s charity Action Medical Research is funding research to develop a new test to help identify babies with NEC so they can receive treatment sooner. They hope this test will lead to swifter diagnosis and reduce the chances of the disease becoming life threatening.
“We said goodbye to Oliver and made our way to Leicester not knowing if he would survive the journey. It was one of the worst journeys of our lives,” says Fran.
Thankfully he survived the journey. The surgery removed half of his small bowel and confirmed the diagnosis of NEC. Following the operation he remained in critical care. An opening (stoma) was made through his tummy to allow faeces to be emptied into a bag.
After two weeks Oliver’s stoma was not looking good. A decision was made to investigate his stomach again and also to insert a broviac intravenous line for nutrition. A further 10-15cm of dead bowel was removed during this surgery and within days Oliver’s stoma began working again and his condition improved.
Oliver was only able to tolerate minimal feeds due to his short bowel and is now fed intravenously via total parenteral nutrition (TPN). He has also had laser treatment for retinopathy of prematurity, an eye disease common in premature babies. A further operation has now left Oliver with just 20 cm of bowel, which further surgery hopes to stretch.
Fran’s due date was 4 September 2013. Instead, on that date she, her husband and five-year-old daughter Ella celebrated their son being 100 days old in hospital.
Fran says: “We’d hoped to have Oliver home for his due date, then his dad’s birthday in October and then Christmas. We have now been told it will be several more months yet. He is now outgrowing the neonatal unit and will soon be moved to a paediatric ward until his stoma is reversed.
“We are now waiting for a bed to become available at Birmingham Children’s Hospital, where Oliver’s liver can be monitored better as his jaundice levels are high due to the TPN. Once his stoma is reversed we will hopefully have a better idea of how well he will be able to absorb food and how long he will need TPN for… and when we can finally get our little baby boy home.”
Dr Caroline Johnston, Research Evaluation Manager for Action Medical Research, says: “Each year in the UK, around 3,000 babies develop NEC and tragically around 35 per cent of these babies die. Doctors and nurses must be constantly on the lookout for symptoms, as premature babies in neonatal units can develop the disease at any time, with little or no warning.”
“No current test can reliably identify babies in the early stages of the disease. This research could make such a difference to many babies’ lives.”
Follow Fran Jones blog at: http://oliverjonesmummy.wordpress.com/
More information on the Action Medical Research funded NEC study at: http://www.action.org.uk/necrotising_enterocolitis
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NOTES TO EDITORS:
High-res pictures can be downloaded from the links below:
- Oliver Jones: http://www.action.org.uk/sites/default/files/downloads/press/oliver_jone...
- Jones family, Oliver 10 days old: http://www.action.org.uk/sites/default/files/downloads/press/jones_famil...
- Fran and Oliver: http://www.action.org.uk/sites/default/files/downloads/press/oliver_and_...
For further information please contact:
Toni Slater, Communications Manager
T: 01403 327478
- Twitter @actionmedres and @amr_events
Action Medical Research is a UK-wide charity saving and changing children’s lives through medical research. We want to make a difference in:
- tackling premature birth and treating sick and vulnerable babies
- helping children affected by disability, disabling conditions and infections
- targeting rare diseases that together severely affect many forgotten children.
Just one breakthrough, however small, can mean the world.
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