Give the gift of life this Christmas

This Christmas the Public Health Agency (PHA) is encouraging everyone in Northern Ireland to sign the NHS Organ Donor Register and give the ‘Gift of Life’.

Almost 200 people in Northern Ireland are currently waiting for a transplant and sadly the chance will come too late for many. 

One family that knows all too well the joy the ‘Gift of life’ can bring is echoing the PHA’s plea.

Andrea Bingham (37) from Newtownabbey donated a kidney to her son Ben (7) three years ago, Andrea explains what life was like for her son: “Ben was born suffering from PUV (Posterior Urethral Valves) which is a blockage within his bladder resulting in both his kidneys being badly damaged.  By the time he was born he only had 15% of normal kidney function.  By the time he was a year old our consultant began to prepare us for Ben having to go on dialysis.”

Life before a transplant can.be very difficult: “What people don’t realise is kidney damage affects lots of other organs and functions.  From five months old Ben had his bladder opened out onto his stomach allowing for free drainage. At seven months Ben had a feeding tube placed in his stomach so that we could feed him through a tube.  This meant he spent several hours a day and all night hooked up to a feeding pump.  Most nights the tube would kink or pull out and the alarm would go off and his Dad and I would have to go and fix everything – we survived with very little uninterrupted sleep. Every morning he suffered from nausea and vomiting – this became our norm. 

“Every year Ben had less and less energy – the oxygen didn’t pump around his body fast enough so he was on injections to help with that. He didn’t have much energy at school and would spend his playtimes watching the other children because he was too weak to join in. Any period of illness would result in days and weeks in the hospital.  Hospital appointments that were monthly became bi-weekly then weekly as his kidneys started to fail more and more.”

When Ben was four his family started to begin the long process of preparing him for the transplant list and for transplantation. Andrea continued: “I began to start rigorous testing to see if I was a match, and thankfully it turned out that I was. Up until the Christmas of 2009 we didn’t know if the transplant would go ahead though as we watched Ben become sicker and sicker. However, we were then given a date of February 2010 for the transplant to take place and it was the best Christmas present we could have had, but we were also terrified. We began explaining to Ben what would happen to him.  It affects everyone – as parents you are terrified that you will lose him; you try to do everything correctly and keep him in the best health you can, but not treat him differently from other children and make this whole thing normal.  At the same time, Ben has an older brother, who was eight at the time, and we needed to explain to him what was going on and not just to Ben.”

Since the transplant, Ben’s life has changed dramatically. Andrea explains: “The change is unbelievable.  He has so much energy now and sometimes I just watch him run around and play with his brother and I am in amazement at the difference in him.  He doesn’t have to watch the other children go and play now – he joins in. He plays hockey and football, but the biggest change is that he eats now. Ben didn’t eat for five years before his transplant. The first time he tried food was his last day in hospital when he had a gingerbread man. Now he is more daring than our eldest and loves trying new foods.” 

The decision to donate organs is a difficult one – often coming for families at the worst time in their lives. Andrea would like other families to discuss their wishes now so that if the time ever came the decision would be easier: “If you could see Ben and the difference his transplant has made to both his life and ours you would really see what a truly amazing gift this is. There are so many families out there at the moment, waiting and hoping for someone to change their lives through the gift of donation. They are trying to keep things normal, trying to be optimistic but they are scared of an organ not coming and what that means for them. They live with a constant fear that they will lose the person they love, that they will lose their child, or their dad or mum, brother or sister. If it were your family – your child, what wouldn’t you do to make them better? By signing up to the organ donation register you aren’t just changing one life – you are changing every life they touch. Ben is the best reason for organ donation I know – he is growing up to be this amazing little person who is kind, sensitive, funny and who wants to be a doctor so that he can help change lives too.”

Speaking about his kidney – named ‘Sidney’ - Ben said: “Having a new kidney is awesome! I get to eat food and try new things. I can go on holiday to Disney World and get turkey legs as big as my head. I love Sidney, he’s my best friend – he keeps me healthy and alive.  Before I was just tired all the time and didn’t want to play. Now I want to play all the time.

“I have been through a lot – like my kidney transplant and skinning my knee the other day, but there is lots to make me happy. I look at Sidney and think to myself – well there’s something to smile about.”

Dr Eddie Rooney, Chief Executive of the PHA and Chair of the Northern Ireland Committee for Organ Donation and Transplantation, said: “Christmas is a time for showing our love and appreciation of others, signing the NHS Organ Donor Register provides an excellent opportunity in which we can showcase this. With this in mind I am appealing for everyone who has not yet signed the Register to please do so today, transplantation is a lifesaving gift that keeps on giving. Ben is proof of this.

“Registering is simple you can  fill in a form online at www.organdonation.nhs.uk, texting save to 84118 or calling the NHS Donor line on 0300 123 23 23.”