"Our baby was a hero" – parents speak one year on from their baby´s death

23 April 2015

Jess and MikeFor Jess Evans and Mike Houlston from Cardiff, the birth of twin boys Teddy and Noah on 22 April 2014 was one of both heartbreak and hope. Teddy was born with a rare yet fatal condition – anencephaly – but his parents were determined his short life would not be in vain.

Once the diagnosis was confirmed during pregnancy, the parents discussed and wanted, if possible, for his organs to be donated. The family managed to spend precious time with him before he passed away and Teddy became the youngest organ donor in the UK.

In the last 10 years, 39 babies younger than 2 years old have become organ donors helping to save the lives of strangers.

As his twin Noah celebrates his first birthday the family are using the anniversary to mark the occasion when his brother Teddy became a hero. His kidneys were transplanted to help save the life of another person.

Jess, 28, said, "Knowing that part of your loved one is living on in someone else is comforting. If it stops any other person going through the same thing then this can only be good. Teddy´s life had a very important role to play. Unless you have been through the same thing or know someone affected it's hard to understand how important organ donation is.

"My mother was very keen to teach her own children about the importance of organ donation and I remember her talking to me about it when I was young. Even when I was in primary school I wanted to be on the organ donor register and encouraged friends, family and boyfriends to sign up!

"Following Teddy´s diagnosis we had some time to acclimatise to what might happen, therefore we decided early on as a family that we would want to go ahead with the pregnancy and donate his organs if this was possible."

Mike, 30, added, "We want Teddy's story to inspire others and help break any taboos people might still hold regarding organ donation. Organ donation wasn't prominent in my life growing up and while I was up for it I never got round to doing anything about it. I´m sure there are many more men like me who think the same!

"I want to spread the word as much as possible about how organ donation saves lives, and that we should all speak to each other about our wishes. Without that discussion it is a very difficult conversation to have when it comes out of the blue. Put simply, you should ask yourself the question "Would you take an organ if you needed it?" Everyone would do so if the truth were told so we hope what Teddy did can educate people and prompt them to get talking."

Dr Paul Murphy, National Clinical Lead for Organ Donation at NHS Blood and Transplant, said: "No doubt we are all in awe at the bravery and selflessness that Mike and Jess displayed throughout the pregnancy to ensure some good came out of their tragic situation and their son´s short life. Their determination to donate Teddy´s organs should be an inspiration to us all. Teddy was the youngest organ donor in the UK and in addition to helping others by donating his kidneys and heart valves, he has opened doors for other parents to donate their baby´s organs in future.

"However, Mike and Jess´s story applies to us all. Almost everyone would accept a transplant if they or their loved one needed one, and yet only a third of us have registered to be an organ donor. Last year, over 40% of families refused to allow organ donation to go ahead, sometimes even when their loved one was a registered donor. In telling Teddy´s story Mike and Jess demand that everyone, young and old, follows their example. Put simply they say, "Do it for Teddy".

"There are currently around 7,000 patients on the waiting list for an organ transplant across the UK. The message is simple: if you would accept an organ, surely you should be prepared to be a donor. Sign up to the NHS Organ Donor Register and tell your relatives that you want to donate. Visit the Registration form or call 0300 123 23 23."

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