GB Leader Claire and her husband Christopher had baby Maisie in June 2022 – at the 20-week scan Maisie was diagnosed with a Congenital Diaphragmatic Hernia meaning there was a hole in her diaphragm and organs were slowly making their way up into the chest cavity, squashing and displacing her lungs and heart.
From the day Maisie was born the family were supported by Tiny Lives, who support premature and sick newborn babies on the RVI Neonatal Unit in Newcastle-upon-Tyne. The charity supplies items, funds, staff specialists, and support.
Claire says ‘Even though we had visited the Neonatal Intensive Care Unit (NICU) nothing prepares you for your child being in an incubator covered in tubes and being pumped with medications. From the first full day we were on the NICU, Tiny Lives charity introduced themselves and offered support. They gave us a bag of helpful items and, during our 12 weeks stay on the NICU, we accessed many services provided by Tiny Lives including counselling, Maisie received specialised physio, we received crafts and cards, tea, coffee and snacks in the family room and we were provided with a sling to use at home.’
Maisie had surgery on day 6 to repair the hernia and move her organs back down, which went well.
Claire says ‘Following this Maisie took many downward turns including a number of infections and sepsis. Despite the odds she continued to fight and make us unbelievably proud. The nurses on the ward really are angels and were with us every step. We were deemed well enough after 11 weeks to be transferred to Sunderland where we spent a further 2 weeks and, finally, we were discharged home!
‘Unfortunately, Maisie’s hospital journey didn’t end there as we were back in the RVI 3 weeks later for 3 weeks and then home with more machinery. And, after a further 3 weeks, we were back again for 5 weeks. On 7 December we were home for Christmas, and we haven’t been admitted since, although we have many appointments. Although Maisie juggles 3 oxygen support machines, is tube fed, and has many medications she continues to fight, develop and smile.’
The family are still supported by Tiny Lives and attend music and sensory classes. Claire’s Girls’ Brigade family wanted to help the local, and much-needed, charity that has been so vital for Claire and Maisie… so they held an afternoon tea for 100 people at their church in March. The tea raised £850 for the good cause.
To find out more about Tiny Lives or to make a donation visit www.tinylives.org.uk