My baby has made history ... child in Britain born to a double transplant mum

My baby has made history ... The incredible story of the first child in Britain born to a double transplant mum

By Victoria Lambert
Last updated at 10:04 PM on 25th October 2008

Five years ago, as she lay in hospital waiting for a life-saving double transplant, Emma Smith could not even contemplate having a family.

Now, cradling her three-week-old son Oliver in her arms, she reflects on being the first kidney and pancreas recipient in Britain to give birth.

'I was shocked to be told I was the first,' she says, 'and it would be great to give hope to other women who have had a transplant of any kind that they can go on to have a family.'

Emma, 37, an administrator from Hitchin, in Hertfordshire, needed a caesarean and as a result has been left with an unusual scar more than a foot long that stretches across her tummy in a large arch.

However, she is not unhappy with this striking legacy of the arrival of her son. 'It's like a big smile on my belly,' she says.

The 'smile' is a reminder not only of her baby but also of the life-saving transplant in November 2003. And while it is unlikely Emma could have had a child without the operation, no one in the medical world was completely sure she could risk pregnancy after receiving her new organs.

There are potentially many women who could be inspired by Emma's story - her transplant was needed due to kidney failure brought on by diabetes, which more than two million people in the UK suffer from.

The most common is type 2 diabetes, which is caused when the pancreas does not make enough insulin to control the body's blood sugar levels, or when the insulin that is produced does not work properly.

But Emma was diagnosed with type 1 diabetes when she was 11; this means her body was not producing any insulin at all.

'I was suffering infection after infection, losing weight, feeling tired all the time, and drinking gallons of liquid,' she says. 'All classic symptoms of diabetes.

'But it was not until a friend of my mum's suggested the possibility of diabetes that my condition was formally diagnosed.'

There is no cure and Emma had to inject herself with insulin four times a day. She also kept a strict watch on her diet to keep blood sugar levels from fluctuating.

Yet she still suffered regular hypoglycaemic and hyperglycaemic attacks when her body was either getting too little sugar, which can cause it to shut down and even enter a coma, or too much, which can cause brain seizures and long-term organ damage.

'It controlled my life. I loved going out horse-riding, but I had to be careful to take glucose tablets with me and monitor how I felt all the time.'

Even so, doctors warned that it would be difficult to avoid long-term damage to her body; and that after ten to 15 years she would experience eye and possibly kidney damage.

'Their predictions were spot on,' says Emma. 'At 26, I developed retinopathy; blood vessels were growing at the back of my eye, which could have left me blind.'

Prompt laser treatment halted the damage.

Then protein showed up in her urine, which meant her kidneys were not working properly. Her doctor put Emma on drugs to stabilise her condition, but impressed on her that she would need to consider a transplant.

'It really hit me how serious this was,' she says.

By her early 30s, Emma's kidneys were working at only 14 per cent capacity - the point at which patients go on the transplant list.

A prospective donor must be the same blood group and the organs must be a good tissue match, so while patients wait, sometimes for years, many need dialysis to clean the blood of toxins.

This is an exhausting process lasting six to seven hours, five days a week.

'I was scared,' says Emma. 'One of my sisters asked whether this would affect my chances of being a mother, but as I wasn't in a steady relationship it did not seem crucial.'

The difficult decision was whether to opt for a pure kidney transplant or the more complicated joint kidney and pancreas operation, which has only been performed regularly in the UK since 1995. The pancreas is a gland that lies across the back of the body between the kidneys.

Not only is this operation more difficult and therefore more prone to failure, it would also mean Emma might have to wait longer for the organs as they would have to be taken from a cadaver donor (we can live with just one kidney but not without a pancreas).

Had she decided on a kidney alone, a living donor could have been found from among her relatives.

Emma decided to wait for a kidney and pancreas transplant, and just ten weeks later - on November 23, 2003 - the call came to tell her the organs were available.

By noon the next day Emma was in theatre at Hammersmith hospital where, in a four-and-a-half-hour operation, transplant pioneer Professor Nadey Hakim gave Emma her new organs, leaving two neat six-inch scars.

It is a complex operation and only seven centres in the UK perform the procedure. 'The pancreas is much more difficult to transplant than the kidney,' says Prof Hakim.

'It's soft and easy to damage. You have to transplant the duodenum - the top of the intestine where it leaves the stomach - at the same time.'

Emma came round later the same day, and recalls: 'I felt so ill I almost wished I was dead. But on the fourth day I woke feeling great. The operation had been a success. Before I went under the anaesthetic I was a diabetic. When I woke up, I wasn't. The nurses checked my blood sugar levels and they were perfect.'

Two weeks later Emma was discharged and by the end of December she was back at her stables, mucking out and riding again.

And when she became pregnant accidentally at the start of this year, she and her partner Stephen Pritchard Barnes, 39, who works as a tree surgeon, were thrilled. They were also nervous about the effects her drug regime might have on the baby.

Emma will always need immunosuppressant drugs because the pancreas rejects very easily, plus aspirin to thin the blood, statins and anti-ulcer drugs.

'I was told to stop the statin and the anti-ulcer drug,' says Emma, 'but to stay on the immuno-suppressants, albeit at a reduced dose. It was thought it could do more harm than good if I didn't take them, even though they could have side effects on my unborn child.'

She was advised to have an elective caesarean at Queen Charlotte's, next door to the Hammersmith hospital, for two reasons: for her baby to be delivered at 37 weeks, before labour began, so as not to get too big and press on the new organs, and for Prof Hakim to be present in case of complications.

'He phoned me when he heard I was pregnant to congratulate me and to say he would be there at the birth.'

Prof Hakim says: 'When we transplant them, the organs are not left in exactly the same part of the body as they would be naturally, as we do not remove the failing kidneys in case they are needed as an emergency back-up.

'So it is possible another surgeon could damage them by mistake, not realising where they were. Any cut in the new organs and they would have to be removed.'

In the end, the caesarean was a success, with the incision created to remove the baby joining up with her two older scars to create that 'smile'.

'I was so nervous but it all went so well,' says Emma. 'Oliver had slightly laboured breathing so he had to go to the special baby care unit overnight, but we were reunited the next day. And all my test results have been steady since then.'

Emma has been unable to breastfeed as the immuno-suppressants in her milk could harm Oliver, but that aside, she has no doubt she would go through the experience again. 'There is no reason not to,' she says.

'Had I not received the transplant, I cannot imagine I would have been well enough to have a baby,' Emma says. 'The person whose organs were donated to me didn't just change my life, he helped make a new one.'

http://www.dailymail.co.uk/health/article-1080558/My-baby-history---The-incredible-story-child-Britain-born-double-transplant-mum.html