“Cautious optimism”: Daniel’s first 91 days and the care that followed

To mark World Prematurity Day (15 November), Julie and Dave are sharing the story of their son Daniel, who was born at 30 weeks and spent 91 days in neonatal care. Julie reflects on the uncertainty of those early months, the people who supported their family and the reassurance of continued follow-up through INFANT’s AIM-HIGH research.

On her 40th birthday, Julie received news she had been waiting for: her son Daniel could come off oxygen.

“That was the best birthday present that a mother could get,” she says.

Now six months old, or four months corrected age, Daniel is doing well, and his parents, Julie and Dave, are looking forward to their first Christmas with him.

An unexpected early arrival

Daniel was born on 12 May, after Julie’s waters broke a few days earlier. The initial hope was that she could remain in hospital and her pregnancy could continue for several more weeks. Daniel, she recalls, “had a different path in mind”.

His arrival happened quickly. Julie had not yet attended antenatal classes, but she remembers the team explaining what would happen during the birth and how Daniel would be cared for afterwards.

From those first days, she valued the team’s openness with the family.

“They were always very honest with everything. They told us everything as it was.”

Finding their way through a long stay

Julie and Dave had expected Daniel to spend around six weeks in neonatal care. He stayed for 91 days.

Daniel had chronic lung disease and needed support with his breathing. His progress was not straightforward, with setbacks sometimes following more settled days. Julie describes the experience as an emotional roller coaster.

“Every time something kind of went wrong or we had a bad day, a few days later something good would happen,” she says.

Throughout their stay, Julie and Dave held on to an approach they called “cautious optimism”.

“We wanted to be optimistic at times and be really positive, but we did realise there could be another bump on the road.”

Julie speaks candidly about how overwhelming those setbacks could feel. Watching other families arrive and leave while Daniel remained in the unit could also be difficult. At the same time, she was aware of families whose stays were longer still.

Each baby’s progress followed its own course. For Julie and Dave, it meant adjusting their expectations and taking encouragement from Daniel’s recovery after difficult days.

The people who made a difference

Alongside the clinical care, Julie remembers the everyday interactions that helped her and Dave through their time in the unit.

On one visit, they found a nurse chatting and interacting with Daniel. Seeing that connection, outside the practical tasks of medication, feeding and changing, stayed with them.

They grew fond of the nurses and their sense of humour, appreciated the support of the nurse manager and looked forward to conversations with a member of the hospital’s cleaning team who always asked after Daniel.

“The staff, the nurses, the doctors, the whole lot of them were just amazing,” Julie says.

When Daniel was ready to leave, staff gave him a guard of honour. After 91 days, it was an emotional goodbye.

Reassurance after coming home

Daniel came home on oxygen. The news that he could stop using it later gave Julie a birthday she will remember.

The family is now taking part in AIM-HIGH, an INFANT-led research programme following the development of infants at increased risk, including babies born prematurely. Its research assessments take place alongside children’s usual clinical follow-up.

For Julie, those appointments provide reassurance and a continuing connection with professionals who understand Daniel’s early experiences.

“Being a part of AIM-HIGH is great because it gives you a lot of reassurance,” she says.

The family was keen to participate when approached about the research.

“We said, absolutely, if this is research and if this is going to benefit Daniel, we absolutely want to be part of it.”

After 91 days in neonatal care and the months that followed, Julie and Dave are looking forward to their first Christmas with Daniel. “We cannot wait,” Julie says.

This World Prematurity Day, INFANT thanks Julie and Dave for sharing their story. We recognise all families whose babies have been born too soon, including those remembering babies they have lost, and the healthcare teams who care for babies and support their families.