A support group for parents of premature and sick babies has well and truly come of age, as NADIA JEFFERSON-BROWN reports.

TWENT-ONE years after its founding, a group which focuses on some of the youngest and most vulnerable patients is thriving, with hundreds of members and even more supporters.

Times have changed, but the aims of the York Special Care Baby Unit (SCBU) Support Group remain the same - to support parents whose newborns need special care.

The continuing need for such a group was highlighted by the plight of Helen Kinder and Jonathon Greenup, whose baby, Joel, died from a serious infection after being born 14 weeks early.

Helen was rushed to the nearest available specialist care cot - in Manchester. York Hospital is not equipped for very premature deliveries as health chiefs nationally believe highly specialist centres across larger populations are the answer.

Helen later made a heartfelt plea for more support, saying she and her family had endured the ordeal alone.

Ellen Willey, founder of the SCBU support group, said data protection laws prevented the group from reaching out to parents - they have to wait to be contacted before they can lend support.

"We could have been very involved. We could have paid for the accommodation in Manchester and been there to support her and her family if we had known. But we can't just step in. And people don't necessarily know about the group until they need it."

SCBU annually helps about 300 premature or sick babies through those crucial early days.

Mums who give birth at the unit receive details about the support group and how to get in touch.

Chairwoman Lynne Britton, whose two-week premature son, Ruaraidh, spent his first ten days in the unit, said: "We are there to provide emotional and financial support."

The group also raises money for the unit - £45,000 bought four new incubators - and runs a premature baby clothing bank.

Gillian Bell, whose sons, Finlay and Joel, owe much to the unit, is considering joining the fundraising committee as a "thank-you".

"Having spent nearly 20 days of my life in the unit I know how hard they work. Finlay had bacterial meningitis and was in the special care unit for eight days. Joel had hyperthermia. Without the special care unit they both would have died. Now they are fighting fit."

Ashley Judge, group treasurer, gave birth while unconscious under a general anaesthetic to her son, Sam, six weeks prematurely, at York. Weighing only 4lb, Sam greatly benefited from the clothing bank's tiny garments.

"That really helped because neonatal clothes are very expensive," said Ashley, who said the group usually raises at least £30,000 a year, often thanks to big donations from local companies.

The group is currently drawing on its funds to support neonatal hearing screening. It has also sponsored neonatal eye tests, breast-feeding chairs, specialist neonatal nursing care courses and much more.

Lynne said: "We rely on feedback from the unit staff about what they need. If we are able to fund it, it means they might not have to wait so long to get it."

Looking back, Ellen said: "It is remarkable the support group is still thriving after 21 years - we started off with six mums. Nurses can do all these wonderful things, but you cannot relate to parents unless you have had a premature baby yourself. I set up the group for the emotional support and friendships have grown. This is what the support group is all about."

To find out more about the Special Care Baby Unit Support Group phone Ellen Willey on 01904 624494 or Lynne Britton on 01904 765017. The group also has a website at www.supportscbuyork.co.uk with contact details of members.

Updated: 08:51 Friday, April 08, 2005