Ahead of their time – Brighton charity supporters use 30th birthday to step up their work

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.

The rollercoaster of emotions can include fear, sadness and anger.

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).

Elaine Rowe and Margaret Hatley

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 Louisa 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 and on their first day fundraising at the store shoppers gave £664.

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 grow and develop to become normal healthy children.

“Full-term babies can also suffer severe problems and require intensive care.

“We hold regular coffee mornings to offer support to the parents of premature and sick babies requiring treatment in a special care baby unit.

“With help from the families, friends and organisations that support us we have also just started to support the Special Care Baby Unit at the Princess Royal Hospital.

Early Birth Association supporters at West Hove Sainsbury’s

“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 very difficult time.

“The high cost of equipment and staff means that 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 homely and comfortable.

“Our regular purchases are blankets, sheets, ‘budgie’ covers, positioning aids, special care baby clothes and ventilator hats, feeding pillows, bedding such as duvet covers and sheets 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 35C.

“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.

“There will no doubt be other items that we will also be requested to purchase.

“To keep in contact with the parents and families that have been in the units, other than the coffee mornings, we 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 for everybody to come along and have fun and a Christmas party for the children and families.”

One mother’s story

Forest Crawford, 3, is an example of why so many parents back the work of the EBA long after they need the help of the expert doctors and nurses in the Trevor Mann.

Forest Crawford

His mother Heidi, 36, said: “He wasn’t breathing when he was born. He had birth asphyxia. They have no idea why he had it – they just dealt with it.

“He had a cooling treatment – he was one of the first. They reduced his body temperature for 72 hours, giving the body time to pause and regenerate themselves.

“They put them on a cooling mat with just his nappy. And he was surrounded by all these babies wrapped in blankets.

“The nurses instinctively wanted to wrap him up. He doesn’t like the cold now!

“He was in the Trevor Mann for eight days. He was monitored for two years. He’s three and a half now.

“I got involved on the (EBA) committee two years ago. I just wanted to give something back. The staff were amazing.”

Mrs Crawford, who lives near the Seven Dials, is running the Brighton Marathon for the EBA next year and is looking for others to join her.

The charity’s supporters raised £5,000 running the marathon this year.

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.
• All other babies pre-34 weeks’ gestation are transferred to the Royal Sussex County Hospital, ideally before delivery, for care at the Trevor Mann.
• The Sussex Neonatal Transport Service is based at the Trevor Mann and provides 24/7 cover with its own team of drivers, vehicle and medical staff. It is used to transport premature and sick babies throughout the Sussex Neonatal Network, Sussex, Kent and Surrey. 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.
• At the Princess Royal 246 babies were admitted to the Special Care Baby Unit, 178 of them having been born at the Princess Royal, with 45 babies transferred in from other hospitals.
• The stay in a special care baby unit can range from one day to up to 6 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.