Saturday, 30 May 2009

'So Why Isn't Ubaid Growing Up Any More?'

The Last Ever Photo Taken of Ubaid and One From Happier Times

Zulf and Nyila Ali - A Truely Inspirational Couple

Remembering Ubaid Just Along the Corridoor From Where He Died Waiting For His Transplant

And My Little William Enjoying Life 6 Months After The Transplant Ubaid Was Waiting For
Life Is So Unfair Sometimes!!
Yesterday's photo shoot was one I was really looking forward to and really not all at the same time. Shortly after William was listed for his small bowel transplant, I received an email from Nyila Ali. She was offering support as she knew how it felt to have a life revolving around intravenous feed (TPN) and line infections. She knew all about living long periods of time in hospital and she knew all about waiting for your son's urgent small bowel transplant. Very sadly, Nyila was not able to offer any experience of receiving that life saving transplant. Two weeks before we arrived at Birmingham Children's Hospital for William's transplant assessment, Nyila and Zulf were kissing their son, Ubaid, goodbye in that same hospital, just along the corridoor in intensive care. Ubaid died of liver failure before organs could be found for the small bowel and liver transplant he so desperately needed. I have been following Nyila and Zulf's story ever since I first heard of them. They have been heroic in their media work to promote organ donation and often pop up on my google alert for 'small bowel transplant'. They are awesome and I was so pleased when Nyila mailed me to say they were interested in taking part in 'Gifts of Life' . I was really looking forward to meeting them but so wish it were in two weeks time, at the small bowel transplant recipient family day that I would be meeting them, not like this. As a mother of a transplant recipient, I feel a kind of guilt about those families who never got to enjoy the new life we are living. Guilt is not really the right word as it implies I wish William had not had his transplant. Of course I am so glad he did and I am glad it is my son who got his call and is alive but I wish Ubaid had as well and so had everyone else who died waiting.
Nyila and Zulf decided to revisit the hospital where Ubaid spent so much of his life, and where he died, for their photo shoot. This was, of course, the very place where our new life began with William's transplant which only highlighted the very different paths our lives ended up taking. I was really worried that I would get overcome emotionally during this shoot. I felt it before, I felt it on the way home and I feel it when I look through the images I captured yesterday. I warned Nyila that I may get emotional and apologised in advance. Nyila and Zulf were so wonderful and I felt relaxed with them as we shared our very different experiences, asked each other questions and chatted away. I was also very focused on taking pictures that would portray their feelings. We were really blessed by some fantastic window lighting along the hospital corridoor and in the chapel. The chapel is a place where all families, whatever their faith or belief, find themselves seeking a quiet moment. The wards Ubaid where spend so much time are along the same corridoor and Zulf and Nyila had also sat in there during these times and were happy to be photographed in there. William was with me for the day and spent the time playing in the chapel while we were taking the photos. It is his favourite place in this hospital and he was enjoying the time there, knowing no one as going to take him back to the ward for painful treatments or 'special sleeps'. This made it all the more poignant.
Before the shoot, we had lunch with the lovely Pauline from the donor family network. I have mentioned before the fantastic transplant network that exists. Pauline had followed William's story and came to see us many times during our transplant stay. She features often in our story over on my own personal blog and has become a very good friend. It was really nice to spend some time with her today and, as you can see, Wills had a lovely time with her. I love that picture, their hands held represents to me the unity that exists throughout the wonderful network of people who are involved in transplants and organ donor awareness. What a contrast that picture is with those of Ubaid, held by his parents.
William is very taken by the people he meets and is beginning to take things on board about them. Pauline is a funny lady who makes him happy and has made him laugh when he was feeling unwell, Emily is that happy lady who plays the piano to him, reads him stories, has lots of fun and has new lungs. William was asking all about Ubaid. At one point, he suddenly announced that Ubaid must have no energy if his new tummy was never found - a very interesting insight for me into how William is feeling himself these days in comparison to before transplant. On the way home, William asked 'So why isn't Ubaid growing up any more?' He knew the answer and was seeking confirmation. Ubaid isn't growing up anymore because he never got his new tummy. For the first time, I am going to ask anyone who has stumbled across this blog to help me to make sure that more people share William's story than Ubaid's from now on. Please think about organ donation. Both Ubaid and William needed organs from children so please think about that too. This is the end of my blog for today. Please go here next.


  1. This is a really powerful blog entry Sarah and I'm sure it'll make some more people consider joining the organ donor register. I've never met Ubaid's family, but they sound so strong.

    Glad to hear Wills is doing so well, I'm really looking forward to meeting him in a fortnight.

    Moll x x

  2. Lovely blog - have tears in my eyes typing this (then typed ears instead of eyes and the moment passed....)

  3. Extremely powerful entry Sarah, it had me in tears. xx