ADAPT was set up in 1995 by parents Fiona and Rob Morris whose son Harry was on a neonatal unit in Leicester for nine months. Harry was born at 29 weeks with chronic lung disease.

Despite having the support of family and friends both Fiona and Rob felt isolated because their experiences were not ones they could share with most new parents. It was the contact with parents who were also going through the daily ups and downs of having a baby on the unit that prompted them to set up ADAPT as a support network for families of premature, seriously sick and disabled babies and since it began the demand for our services has grown very quickly.

Family life goes on. Coping with the demands of a sick baby as well can be difficult and emotionally draining. Then of course, there’s all the medical jargon and technical details you’re trying to understand. It’s one day at a time. Some days are easier than others, and some days you don’t know how you get through.

With our limited resources we now provide

• An advocacy and befriending service
• Advice on maternity rights/entitlements for all parents
• Drop-in sessions on the units where parents meet with other parents while siblings play in a supervised ADAPT play corner
• Specialist equipment to allow early discharge from the neonatal units and baby packs containing useful information
• Liaise with outside agencies who provide funding to families of disabled and severely ill babies and children for essential items to ensure babies return home to a safe healthy environment
• Signpost and refer to other agencies where their expertise is more appropriate
• Weekly support groups (In-B-Tweenies) for parents, babies and siblings.
• Organised outings and social events to bring families together
• Regularly provide two hour training sessions to new medics transferred to the neonatal unit on listening to parents views and implementing their requests
• Support the Leicester neonatal units by undertaking parental research for the Central Newborn Network developed from the DoH “National Strategy for Improvement”
• ADAPT provides baby packs with helpful information to every parent on the units.