Mum’s campaign to change rules on organ donation

Natalie Kerr
Natalie Kerr

A mum enjoying precious time with her children after a double lung transplant is calling for the introduction of an opt-out system for organ donation.

Mum-of-two Natalie Kerr really did receive the gift of life.

Natalie Kerr, who had a double lung transplant, with children Isabelle, eight, and Brandon, 13

Natalie Kerr, who had a double lung transplant, with children Isabelle, eight, and Brandon, 13

The 34-year-old underwent a double lung transplant in February 2012, nine months after being told she had just a year left to live.

Natalie was diagnosed with pulmonary hypertension while in labour with her daughter Isabelle, a rare condition which causes the blood vessels in the lungs to narrow and affects the flow of blood and oxygen.

She became so ill that she had to use a wheelchair because she could not walk more than a few metres.

But her life changed when she received the transplant and she has so far had four extra years with her children.

Now Natalie, who lives in Adlington, is doing her bit to help others.

She has a petition calling for an opt-out system to be introduced for organ donation, so people are automatically on the register unless they choose otherwise.

Natalie said: “The main thing I find when I’m talking to people is that they are not on the organ donor register.

“They say they haven’t got round to it or they are worried they will jinx themselves if they sign up to it.

“A lot of people have said they think it should be that everyone in the UK is on the register and those who don’t want to be can come off.

“I wanted to start a petition to make that the law.”

The online petition was set up a few weeks ago and already has more than 2,400 signatures.

If it reaches 10,000 signatures, the Government will respond, and it will be considered for a debate in Parliament if it reaches 100,000 signatures.

Natalie said: “Even if I don’t get the signatures, at least it will get people talking about organ donation and get people to join the register and still save lives.”

The opt-out system was introduced in Wales on December 1. It assumes people have no objection to their organs being donated, unless they register not to be a donor.

Natalie hopes the change will be rolled out across the UK in a bid to save more lives.

But she says that just because people would automatically be on the register, they would not necessarily became a donor.

For example, the cause and place of death can affect whether someone is a suitable donor.

Because organs have to be transplanted quickly, they can only be donated by someone who has died in hospital. Usually organs come from people who are certified dead in a hospital intensive care unit, generally as a result of a brain haemorrhage, major accident like a car crash, or stroke.

People would also be able to opt out of the register.

Natalie said: “Some people are coming to me to say this is wrong and I shouldn’t do this, but the reality is that 500,000 people die each year and only one per cent are potential organ donors.”

Natalie feels passionately about organ donation after undergoing a double lung transplant.

She started feeling short of breath after the birth of her son Brandon, who is now 13, but doctors did not find anything wrong.

But it became worse when she was pregnant with Isabelle, now eight, as she started turning blue and fainting.

After Natalie went into labour at 33 weeks, tests found her heart was enlarged and she had pulmonary hypertension.

She said: “I didn’t really know what it was - I was in the middle of having a baby.

“It was only afterwards that I looked into it. I found out I might have three months to live and there was no cure. I was devastated.”

Natalie left hospital but rather than being able to enjoy the start of Isabelle’s life, the lack of oxygen meant she was constantly sleeping.

Five months later she saw specialists at a hospital in Sheffield and received medication.

But Natalie’s health continued to deteriorate - she needed to use a wheelchair and a stair-lift because she got so tired simply walking from one room to the next.

A fund-raising appeal was launched to raise £40,000 so she could go to the USA for stem cell treatment.

She did not pass out for a year after the treatment, but then she became ill again and was being admitted to hospital more frequently.

Natalie was told in May 2011 that she had just a year to live and was put on the transplant waiting list that October.

She said: “I thought I might not get lungs in time. I started writing a will and making plans.

“It was heartbreaking. The worse thing of it all was the thought of leaving my kids.”

Four months later Natalie received the news she was waiting for - a pair of lungs was available for her.

The transplant went ahead and just weeks later, Natalie was allowed to go home.

She said: “The minute I left the hospital I felt so different. I walked outside and was so excited. It was like going into a brand new world.”

Natalie continues to take medication and gets out of breath if she runs, but no longer uses a wheelchair and can spend time with her children.

She appreciates every moment and always thinks about what has happened that day as she bathes each evening.

“I soak everything in and I enjoy everything, “ she said. “Before I took it all for granted. Now I want time to slow down. While I’m better, it’s going so fast.”

And she remains grateful to her donor, saying: “I would not be here today if it wasn’t for the lady who gave me her lungs.

“I hope she is proud of me making the most of the extra time I have got, that she has given to me.”

To sign Natalie’s petition, go to petition.parliament.uk/petitions/128473.