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Losing a loved one is always heartbreaking, but when that loved one is your child, it goes beyond all expectations of how life is supposed to be. In 2007, we lost our baby daughter Ruby, to VoGM, Vein of Galen Malformation, an abnormality we had never even heard of. She died of this malformation of a vein deep in her brain just 10 days after her first birthday.

 

With Ruby gone, the only way we can truly help now is to try and make a difference to ensure that other parents do not have to lose a child as we did. Vein of Galen Malformation most commonly afflicts babies and young children and usually develops in the womb.This is why is it particularly difficult to diagnose before it becomes critical, as was the case with Ruby. She had been a happy and apparently quite healthy little girl but then just after her first birthday she became unwell and appeared to be in pain and was admitted to hospital. Doctors were unable to detect exactly what the problem was and she was transferred as an emergency to the John Radcliffe Hospital in Oxford. From then on our lives went into freefall. Several Doctors saw her, took many blood samples and other tests were carried out, all of which were very distressing for Ruby. Despite all their efforts, they could not find what was wrong. We were in a living nightmare. You always want to protect your child but now there was absolutely nothing we could do.

She had been in hospital for 5 days and I had been with her night and day throughout this period. On the Monday she woke very early crying and holding her arms up for me to pick her up. She then had a seizure in my arms. I rushed Ruby to the nurse’s station in blind panic and she was taken from my arms and immediately transferred to the pediatric intensive care unit where they managed to stabilise her on a life support machine. For the rest of that day the staff tried everything they could to find the reasons for her condition and treat it. At one stage they suspected meningitis and we were all praying they could do something to save our little girl.

A brain scan finally revealed she had a mass at the base of her brain. We were warned that the only option was to operate to try to relive the pressure that had built up.. Tragically this was not successful, the pressure could not be relieved and we were then advised by the Team of Consultants that there was nothing else they could do; we must prepare to say goodbye to our darling child. Just how do you prepare yourself to do that?

 

Whether you are a parent or not, you can imagine how absolutely devastating this news was. At the time we just couldn’t believe it was happening and we prayed we would wake up to discover it was all just a bad dream. But the reality was that it was our worst nightmare. We then had to take the heart-wrenching decision as to when to turn off our darling Ruby’s life support systems.

At 9.00 pm on 26th November, 10 days after her first birthday, surrounded by her family, our little girl died in our arms.

Regardless of what had gone before that moment, nothing can prepare you for such a tragic loss – we knew she was desperately ill but we still thought there would be a last minute miracle that would save her. We were all totally numb and in a state of absolute shock. Over the next few days the reality set in.

A post mortem revealed the Vein of Galen Malformation. It was thought this the vein had been seeping into her brain and on that fateful morning must have burst completely, which meant by then, Ruby had had little or no chance of survival. What we do live with is the knowledge, that if this had been detected earlier, just maybe, Ruby could still be with us today.