Ahead of their time

The Early Birth Association is marking its 30th anniversary by stepping up its work to support pre-term babies and their parents. Frank le Duc reports

Some of the best views of Brighton and Hove are to be had from the 14th floor of the tower block at the Royal Sussex County Hospital. But many of the people who spend day in day out there are too preoccupied to take in the panorama. They are either working in the Trevor Mann Baby Unit or sat by their child’s cot. Or children’s cots. Many of the pre-term babies who are looked after in the special care baby unit are twins or triplets.

For many of those parents it is an anxious time. Some of the tiny arrivals are seriously ill. Parents are often justifiably worried about whether their child will survive. Some mothers find it hard to bond with a newborn child who looks like slipping away from them. As well as the uncertainty there is the knowledge that their difficult situation is beyond their control.

Thirty years ago a few of the parents of premature babies who were cared for in the unit formed a support group called the Early Birth Association (EBA). One of those women, Margaret Hatley, became the charity’s chair and remains a committee member and trustee. A few weeks ago Mrs Hatley and her daughter were among dozens of parents and their Trevor Mann “babies” of all ages who spent a day fundraising at the West Hove Sainsbury’s. They have been chosen as the branch’s charity for
the year.

Margaret handed over the reins as chair of the EBA to another Trevor Mann mum, Elaine Rowe, a few years ago. Mrs Rowe, 43, who lives in Portslade, spent six weeks in the Trevor Mann 18 years ago when twins Carley and Tash arrived at 32 weeks. She said: “They were 3lb 8oz and 3lb 14oz. Tash was in intensive care. She needed help with her breathing so she was on a ventilator. Carley was in intensive care. She was breathing but needed more oxygen. Carley needed a blood transfusion. Both were jaundiced and under ultra-violet lights. Other than that, they just needed lots of feeding and lots of loving and lots of building up.”

Two-way support
The affection felt by parents like Mrs Rowe is deep and long-lasting. Mrs Rowe, the EBA committee and their supporters have used the 30th anniversary of the association to step up their efforts to support the unit that supported them. She said: “The EBA was originally set up with the help and advice of a consultant paediatrician who was very well aware of the need to offer practical help and support to parents enduring such an extremely traumatic experience.

“Technological advances have meant that there is a better outcome for babies, particularly those who are born prematurely. Babies born from 23 weeks’ gestation and weighing as little as 17oz – a half a bag of sugar – can develop to become normal healthy children. Full-term babies can also suffer severe problems and require intensive care.

“We are all volunteers and are parents who have had experience of babies requiring specialist care. We visit the units regularly to introduce ourselves to parents and offer encouragement and hope during a difficult time.

“The high cost of equipment and staff means there is little money left for the ‘nice, comfortable’ items for the units. With the monies received, we purchase items that are requested to make both the baby and the parents stay more comfortable. Our regular purchases are blankets, sheets, ‘budgie’ covers, positioning aids, special care baby clothes and ventilator hats, feeding pillows, bedding and crockery.

“Each year we make larger purchases of equipment. In 2011 we purchased a Tecotherm Neo System (transport cooler) to keep babies with certain conditions cooled while they are being transported to their designated special care baby unit. This reduces the risk of disability by cooling the brain and body to 35°C. We also purchased colourful privacy screens along with new sofas and chairs for both the Trevor Mann and the Princess Royal special care baby units.

“In the coming year we will keep making our smaller ongoing purchases. We have also been asked to purchase examination lights, feeding chairs, a cerebal function monitor costing approximately £15,000, medicine cupboards and digital TVs for both the Trevor Mann and the Princess Royal special care baby units.

“To keep in contact with the parents and families that have been in the units, we hold coffee mornings, and send out newsletters every three to four months, advising them of what we are doing and how they can help. We also organise a summer picnic at a local farm and a Christmas party for the children and families.”

A doctor’s view
Dr Ryan Watkins, a consultant neonatologist at the Trevor Mann, said: “For 30 years, a dedicated group of parents, some of whom have been there from the start, have worked tirelessly to improve the care we can provide to babies and their parents on the Trevor Mann Baby Unit. We call it the Early Birth Association.

“Working together, we ensure we have the best equipment, most comfortable surroundings and motivated staff to sustain a first class service of which the EBA can be justifiably proud. We hope those in our city who have had to use it agree.
“Now also working on behalf of our sister unit at the Princess Royal Hospital, we rely on the EBA to help fundraise, encouraging the selfless giving of hundreds of individuals and families every year. We are truly fortunate to have their help, congratulate them on reaching their 30th birthday and look forward to working with them for years to come. We need them more than ever.”

Small facts
• There are three wards with 27 cots in the Trevor Mann Baby Unit. Nine are staffed for intensive care, eight for high dependency care and ten for special care.
• The Special Care Baby Unit at the Princess Royal Hospital in Haywards Heath has eight special care cots. These are for babies who are delivered at 34 weeks’ gestation.
• The Sussex Neonatal Transport Service is based at the Trevor Mann and provides 24/7 cover with its own team of drivers and medical staff. Last year the service transferred 298 babies.
• In 2011, 562 babies were admitted to the Trevor Mann with 390 of them having been born at the Royal Sussex,and 172 babies were transferred to the Trevor Mann from other hospitals. The Trevor Mann had 92 sets of twins and four sets of triplets.
• The stay in a special care baby unit can range from one day to up to six months.
• The cost of caring for a sick or premature baby in special care baby unit for a year is about £60,000 for the medical equipment of one intensive care cot, with the staff costing about £120,000.