A kiss could kill her: Couple desperate for bone marrow match for their baby who has no immune system



15:35 GMT, 3 May 2012

A desperate couple are in a race against time to save the life of their baby daughter after she was born without an immune system.

Oil executive Graeme Warnell, 42, and his wife, Aga, 37, have just four months to find a bone marrow donor to save 10-week-old Nina.

Little Nina suffers from ‘bubble baby syndrome’ and is so fragile that even a common cold could kill her.

Nina suffers from 'bubble baby syndrome' and is so fragile that even a common cold could kill her

Nina suffers from 'bubble baby syndrome' and is so fragile that even a common cold could kill her

She is in a sterile germ-free hospital chamber and her parents can only visit her by passing through an airlock wearing a surgical mask, hat and scrubs. They have to be painstakingly clean and hold her wearing gloves.

Although Nina can only see their eyes through their medical outfits, she smiles when they walk in and gurgles when she hears their voices.

The condition, also known as severe combined immune deficiency syndrome, affects just one in 300,000 babies. Most untreated babies die within a year.

Now the couple, from Maidenhead, Berkshire, are begging people to see if they are a match after being told they have a ‘three or four month window’ to find a donor.

Graeme, European operations support manager for BP, said: 'When Nina was born she looked like a healthy regular baby, but it wasn’t long before we realised something was very wrong.

'After two weeks she stopped eating and gaining weight. I tried to reassure my wife, but her instinct told her something wasn’t right and we went to hospital.

'When the doctors told us Nina had no immune system it was as if our worst nightmare had come true.

'We went from being the parents of a smiling, contented baby to knowing that our daughter may have just months to live.'

Graeme Warnell with his wife Aga

Graeme Warnell with one of his other daughters Mia

Hopeful: Graeme Warnell with his wife Aga and one of their other daughters Mia

Aga, an English teacher who gave up work to look after Nina and their two other daughters, Megan, 10, and Mia, two, said: 'I want to be able to touch my baby’s skin and kiss her, but I can’t.

'Nina smiles at us and responds to our voices but my fear is we may still be waiting for a donor and she will get sicker and weaker.

'We have to see her suffering knowing there is nothing we can do but hope the key is out there locked inside someone else.

'My dream is to see my children playing together, holding hands, playing in the garden and having a future together.'

Nina is being treated at the Children’s University Hospital in Krakow, Poland, after Graeme started a two year work secondment in the city weeks before her birth.

The couple planned to bring her back for treatment at Great Ormond Street Hospital, London, but even a trip by medical jet poses too much of a risk of her picking up an infection.

Nina is kept in a sterile germ-free hospital chamber

Nina is kept in a sterile germ-free hospital chamber

Graeme added: 'My wife and I have to take it in 12 hour shifts to watch over Nina at the hospital.

'If she became unwell it would take seven minutes to get back through the airlock so someone needs to be with her the entire time.

'If one of us has a sniffle we can’t see her because it may prove fatal.

'Nina had a bout of rotavirus and pneumonia, and we thought that was going to be the end of it, but she’s tough. The doctors have said she is a real fighter.

'We’ve focused our attention on finding a donor and saving Nina’s life.

'At the moment we’re holding up okay, but if we get to month three or four without finding someone then it will get desperate.

'Our eldest daughter, Megan, wants to help but we’ve all been tested and none of us is a match.'

Severe combined immune deficiency is a condition where the body has a lack of T-cells, which direct the immune system to fight foreign invaders, such as viruses.

As a result, the body surrenders to relatively minor infections and the person dies.

If a match is found and cells are transplanted, Nina, who has a rare gene type, will have a 60-90 per cent chance of survival.

Children’s University Hospital’s paediatrician and immunologist Dr Pituch Noworolska said: 'Everyone here is fighting to keep Nina healthy.

'It is a very difficult condition to treat and it’s our job to keep her free from infection and viruses.

'There is a four-month window to find a donor because she is being fed a constant stream of antibiotics but she will soon become immune to them.

'We’re speaking with Great Ormond Street Hospital, who are experts in this condition, and receiving some of the best advice in the world.'

For more information about becoming a donor visit www.anthonynolan.org