A piece of me!

Annette is a mum to three girls, Emily and Bekki 8 and Georgina 6. Her husband Richard is pastor of Downe Baptist Church. She is a part-time staff nurse in a Christian nursing home in Bromley. This is her story...

It was back in February 1993 that my first scan revealed not one but two babies, we were both delighted. On a Monday morning five weeks before my due date our girls were born seven minutes apart weighing 5lbs 10ozs and 5lbs 11ozs.

It was later that we found out that the twins had suffered a rare and often fatal complication. It is a disorder of the placenta, giving one twin too much blood and the other not enough. Emily was grey due to lack of blood and Bekki was bright red with too much. Although Emily was unwell that day, we were told she would recover and that it was Bekki who might become ill. Fortunately she has always remained healthy.

It was on Tuesday afternoon that a concerned nurse said Emily had not passed urine all day as her kidneys had stopped working due to the blood pressure at birth. She became more sick over the days that followed and gained weight even though she received no milk. She became colder as her little body swelled up. All the things I had looked forward to doing with these two girls would not happen as my little girl was becoming worse. By Friday I could see she would die over the weekend as no treatment was available for such a small child.

Emergency dash

I was woken up in the early hours of Saturday morning as Emily's blood test showed the potassium was now dangerously high and she was to be transferred to Guy's Hospital in London. There a tube was placed in her abdomen and peritoneal dialysis saved Emily's life. We stayed at Guy's for two months. Then we returned twice a week for dialysis until she was three months old, when her kidneys recovered enough for it to stop, although her kidneys were both badly damaged, working at only 18%.

Despite her chronic renal failure Emily and Bekki hit developmental milestones at similar times. Her biggest problem was eating or rather the lack of it. Emily only drank water and ate almost nothing, being fed by a tube which went up her nose and down into her stomach - she had a pump which fed her overnight. Every morning she was sick. Despite help from three feeding clinics and lots of encouragement she never ate more than the occasional crisp.

While Emily was tiny we knew that she would one day outgrow her tiny damaged kidneys. Our hope was that either Richard or myself would be able to give her one of our kidneys. This would avoid waiting for a bleeper to go off telling us a kidney was available. Also, statistically, living donor transplants are more successful. It was during the summer of 2000, after many tests, that we learned Richard was an adequate match. He thought it a privilege to be able to do this for her.

Six-hour operations

On October 10 1993 I took Bekki and Georgina to school and kissed them goodbye, knowing I would not be doing it again for six weeks. The six-hour operations took place the following day. Friends all over the world prayed not just for Richard and Emily but also for her sisters at home with grandma.

It was good to have all those prayers as the days that followed were hard. I had very little sleep, a husband in pain on a ward five minutes' walk from a grumpy seven-year old having lots of unpleasant things done to her.

But within days Emily and I were sharing a McDonalds together - she had eaten almost nothing for seven years and would try anything. Odd favourite foods soon came, sausage rolls, coleslaw, chips, jacket potatoes, toast, salmon and sushi.

Six weeks after the transplant, Emily had a further operation. Her feeding tube was removed. We were delighted. She could now drink 1.5 litres daily, eat enough calories and take all her revolting medicines herself. We were delighted at this amazing achievement.

There have been many clinic visits and over 80 blood tests. We have to wait for the results each time before we go home. Her schoolwork has improved and is much neater, she has a new sense of humour and more energy. One of Emily's goals was to be a real twin as she was much smaller than Bekki. She has managed to catch up some of that height - being a true identical twin is now a possibility.

Back to normal?

In May this year Richard and I were talking. We both felt that with clinic visits now only every two weeks, life was finally getting back to normal.

As I drove home from Bromley one afternoon in June a speeding car lost control and smashed into my car. The front of the car was crushed and I was trapped; with petrol leaking from the car I was terrified. I was never more pleased to see anyone as I was to see the first fireman. The pain in my broken left leg grew worse in the ambulance and in A & E despite large doses of painkillers. I began to think I must have a very low pain threshold. Eventually, after three hours the orthopaedic registrar found the problem and I needed immediate surgery to save my leg. While I was lying on the trolley he told me what it would take before my leg was fixed - four operations, two weeks in hospital, a metal frame screwed through my skin and into my bone for 20 weeks and seven months off work. None of this was an exaggeration. Six months later I am starting to walk without crutches.

The injury was so serious I was not just in danger of losing my leg. It was a major disruption to our family life. I did almost nothing at home for ten weeks. I was amazed to hear Christians say it must be lovely to sit and watch Richard get on with the housework - no, it wasn't. Watching Richard wash up the things from Sunday lunch at 10.00 pm, having been up at 6.00 am to finish writing sermons was never a pleasure.

What to make of it?

What are my reflections after such a year? Psalm 139 is my favourite. Verse 14 says: 'I praise you because I am fearfully and wonderfully made.' As we have struggled with the effects of ill health it makes me realise just how amazing and intricate our bodies are.

Verse 16 says: 'All the days ordained for me were written in your book before one of them came to be.' All of the things which have happened to us have been part of God's plan for us. In the hymn, 'Holy, Holy, Holy' there is a line, 'Unresting, unhasting' - I often rush around when circumstances catch me out but God never has to do that.

There are days when I want to take Emily away from all the blood tests and other things that frighten her and I can come to God with these things. It is not wrong to ask him 'Why'? A Christian couple we admire was very helpful to me. Many years after the death of their child they said they still did not understand the reason for his illness and death.

The police phoned Richard to inform him of my crash. As he passed our smashed car, he wondered if he would actually see me alive. When I saw the photos later I understood what had worried him. Verse 5 continues: 'You hem me in - behind and before.' How true it was that God's hand was there. My car had been flung around the road by the impact but, on a busy road, it could have been much worse.

As Christians, we are called to care for each other in practical ways. Generally I find this easy to do. It has been humbling to accept this care from others. But the help given to us by friends and family has been touching and varied. We would never have managed without them all.

I am very grateful for the skill especially of the surgeons who performed Emily's surgery and also the doctors and transplant nurse responsible for her on-going care. I am thankful, too, for the anti-rejection drugs that keep her healthy. I pray that her new kidney will work well for many years, but this is not Emily's greatest need. Along with Bekki and Georgina, they need to know Jesus as their own Saviour.

During eight months, I spent eight weeks away from home in hospital. On crutches there have been many things I could not do, so our girls have tidied, made me drinks and toast, put loads of washing in the machine and many other things. I am very proud of them.

I remind Richard occasionally that my name means grace - unmerited favour ù a gift from God. Richard is another of his amazing gifts to me.

A shattering year in the life of a pastor's wife

Emergency dash

Six-hour operations

Back to normal?

What to make of it?

Annette Hart

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