Wednesday 12 June 2013

Zoe's 5th Year Legacy! - Organ Donation

Both of my girls had open heart surgery in 2009 you can read about it HERE & HERE (it's in two parts) During and after the surgery I found quite a few Facebook groups about the Freeman hospital and support groups for people with heart problems or parents of children with heart problems....I met a wonderful woman Julie Chambers in one of these groups...She was mum to Zoe!..She is well known in the 'heart community' and is committed to raising awareness of organ donation!!

It is 5 years on the 12th july since Julie's daughter Zoe passed away and her story - this story has been an inspiration to many people around the country!!

In June 2007, Zoe was diagnosed with cardiomyopathy, which is swelling and enlargement of the heart. Zoe's mother Julie kept a bedside vigil as Zoe spent several months of her life in three different hospitals. Throughout those months Zoe suffered six heart attacks and was eventually put on a Berlin Heart equipment that did the work of her heart.

 As Julie and her husband Rob waited for a donor, their plight inspired the Daily Mirror to launch a campaign, using Zoe’s image, to encourage people to sign up to the NHS Organ Donor Register. A staggering 1.2 million signed up, and four days after the campaign began, a donor was found for Zoe.

Zoe had spent 100 days attached to the artificial Berlin Heart!! On June 28th 2007 Zoe underwent surgery at Newcastle Freeman Hospital that took around Ten and a half hours when they removed the Berlin Heart and replaced it with the transplant. 

This was not the end of the road Zoe had a long battle to recover from the surgery. Zoe was on numerous different medications, taking many tablets each day just to stop the rejection of the new heart. She was fed through a gastric nasal tube and used a nebuliser twice a day to keep her free from infection. Despite the hospital saying she would have to stay in there for a period of around three months, Zoe amazed everyone by being discharged home after just a couple of weeks.

Zoe to her mothers delight took her first steps on Mother's Day in March 2008 and was soon bounding and running around. And after her medication was reduced she had her first taste of solid food.

Things were going so really well for Zoe she was shortly to take part in the British Transplant Games that would be staged in Sheffield, where she was entered to compete in an obstacle race and a ball throwing event as well as the twenty five metre dash. On June 29 2008 all the hospital trips and other worries were put aside for a party at the Milburn Leisure Centre to celebrated a year of good health. Almost 200 people turned out to celebration with Zoe and her family.

All the milestones Zoe had reached over the past course of the year were shattered on Saturday 12th July 2008 when, after falling ill at the family home, Zoe was rushed to hospital where she passed away.

After Zoe’s death, Julie joined Facebook to keep in touch with mums she’d met in hospital and now provides vital support to thousands of mums with sick children as well as raising awareness of organ donation.

Think about it!!

If your child was ill and needed an organ transplant to live would you take one? Are you registered on the Organ Donor register? If you answer yes to the first you should definitely answer yes to the second... 

Please sign up and join the NHS Organ Donor Register!! In memory of Zoe!! It's very simply and only takes a few minutes...

Zoe's mum gave me permission to post this! 
Post Comment Love


  1. Hi, I'm just one month into my baby girl having a heart condition. At 3 months she was hit with Kawasaki Disease which attacked her heart and has left her with large aneurysms on her coronary arteries. Horrendous rollercoaster of emotions, as I'm sure you are all to well aware. Thanks for posting this. These babies need to be remembered and awareness needs to be raised! Thanks for sharing this. Claire x

    1. You're so right these babies need to be remembered and awareness does need to be raised!! I've been reading you're blog & about your little girl!! Glad to read things are looking better with her heart! Thinking of you all x

  2. Such a sad story and so horrendous that anyone has to go through this. I think it is so important to be an organ donor, after all once we are gone, if we can help someone else then that's great. I hope your girl's are doing well.

    1. It is so horrendous! I think everyone should be an organ donor with an opt out option....
      Yeah my two are doing fine back in August for their check up...Hopefully nothing has changed with them :)
      Thanks x

  3. What a moving post, I totally agree that it should be an 'opt out' not 'opt in' process. Well done for highlighting such an important issue.

  4. So important. Can't understand why anyone wouldn't be a donor if they could.

  5. What a tragic story. And a very moving post. I can see why Zoe's mum wants to raise the awareness.