The Need to Remember - Personal Story

Ben's Story...

"If you can believe, all things are possible to him who believes"(Mark 9:23).

When my husband Michael and I found out that we were expecting our first child, our lives changed. Every day was full of new meaning and excitement; our home a happy place, full of laughter and chatter about the baby we already loved so much. We both enjoyed the pregnancy to its fullest, soaking in every new experience and standing in awe at the miracle of a new life.

Five months into the pregnancy, I received a phone call from a doctor, explaining that the results of a certain blood test were abnormal, showing high levels of protein in my bloodstream. We were then told not to worry as there could be many reasons for these results, but were still booked in for an emergency scan the following morning. Even though it was a shock to be told there could be a potential problem with our baby, I remained positive that there would be a simple explanation, and planned to go out for a meal once it was all over to celebrate our good news.

Four doctors crammed around the screen in the small examination room. While they discussed our situation amongst themselves in their specialized jargon, I held Michael's hand. I was squeezing so hard, his fingers were drained of all colour. I knew I was sensing something he was not. Everyone stopped talking and we were ushered into a side room where we were bluntly told the harsh reality of what had been seen.

Our unborn baby had severe spina bifida and hydrocephalus. The lesion on the back was so long that they were ninety-five per cent sure the lungs would be paralyzed, and that this would prove fatal after delivery. Our baby, if born alive, would die a cruel death as the lungs were damaged.

Then they told us that we were expecting a boy followed by 'when would you like the termination?'

The next hour was spent listening to doctor after doctor, telling me to abort. I would be a cruel mother to allow my baby to come into this world with no hope, just suffering. It was the longest hour of my life and I left the hospital completely drained, with a stack of leaflets on abortion.

Four weeks later, I was referred to a different hospital and placed under a consultant. There I had another scan which was more detailed and revealed even more disbelief. Our baby boy, Benjamin, had hydrocephalus which meant that the area around his brain was being filled with spinal fluid causing swelling and pressure on the brain. As a result the head was distorted, 'shaped like a banana and his brain like a lemon'. The doctors believed that his condition would not improve but continue to deteriate. Again they fed me with shocking information. If Ben did survive, it would be for a maximum of twelve hours and during that time he would not be able to see me, hear my voice, and feel my touch, feed or smell. There would be complete brain damage and distortion to his little head and face. I was even advised not to look at him because the shock would be too much to bear. I was then prepared to expect labour at any moment, as the odds of delivering at full term were almost nil. A natural birth was out of the question as they expected Ben's head to be too large for the birth canal and even for a normal incubator.

Before we left, a radiographer strongly advised us to terminate the pregnancy despite the fact that I was almost six months pregnant. Termination at this time would involve delivering the baby and injecting it with lethal medication into the heart. They truly believed that this was the best thing to do for my baby and they could not understand why we were not going through with the procedure.

A week later during another scan, we gave the doctor our reason for continuing with the pregnancy. We believed that our baby boy, Benjamin, was our gift. If we only had twelve hours to hold his tiny fingers and feel him breathe, they would be the most treasured hours of our lives. We had no right to say when it was time for Ben to go. We could not take his life away, regardless of the reports that were telling us there was no chance. We had to believe that he would survive.

The remainder of the pregnancy was emotional, stressful and strenuous. Every morning when we awoke, we wondered if it would be the last day we would feel our Benjamin move. Although it was difficult to stay positive, we did our best, and decorated the nursery, filled the wardrobe with little outfits and prepared our home for the newest member of the family. Michael continuously encouraged me saying that we would bring Ben home and that I would be able to tuck him into his cot at night and dream about his future.

I wish I could have been stronger, been the woman I thought so often I would be in a crisis. I wasn't. Although I believed that our lives and Ben's life was in the hands of the Master, it felt as though I was just stumbling through every day. So many questions raced through my mind. Was it my fault? Did we pass it on? Could it have been avoided?

Sometimes, I thought I was going insane. But with the most supportive and loving family I could ever wish for, and friends that surrounded me, I got through those days. They held me and Ben up in prayer and stood for me when I could not.

I will always feel privileged that I had so many wonderful people in my life, during the hardest times of my life.

By thirty weeks, after many scans and tests, doctor's discovered a new condition. Ben's heart was not pumping blood the way it should have been and this situation alone was fatal. Ben was given no hope and we were just told to wait it out and prepare ourselves for his inevitable death. A caesarean section was booked for thirty-nine weeks and until that date I was scanned almost every week, with little sign of improvement. Those last few weeks of pregnancy were wonderful. I felt well and enjoyed feeling every movement. My faith began to rise.

I had nothing to cling to in the natural - all hope was gone, but I believed and waited expectantly for my miracle. It came. On the 5th of June 2003, Benjamin was born. As surgeons stood working, I thought my heart would stop beating. Out of the quiet yet frantic functioning's the room was suddenly filled with the loudest noise I have ever heard.

It was our boy, letting us know that he was here and ready to fight.

The lesion which was 'impossible to correct' was corrected within 24 hours with no infection or complications. Surgeons who performed the operation never believed that he would survive the trauma. Not only did he survive but he came off the ventilator hours after surgery and slept well without any distress. Ben's head measured at a normal size for his weight and length even with the swelling, and within five days, after the insertion of a shunt the fluid had completely gone. Ben suffered no brain damage at all and has perfect vision and hearing. Doctor's were unable to find any trace of a heart defect and his breathing was perfect. Instead of facing four months in hospital as originally thought, we spent three weeks there before bringing Ben home.

Ben is nearly three years old now and although there is no movement in his legs yet, we wait expectantly. He is a happy, intelligent and loving child who is full of energy and life. His mental development tests show that he is a year ahead of his age in many areas and he is ready to start school this summer. Ben does the same things as other children, just a little differently. He has astounded the medical professionals. He astounds me every day.

When I look at Ben I see a wonder. A beautiful wonder.

Helen Csaki