Losing a baby

Katherine writes about coping with the death of her baby

I would like to share my experience with other parents. It will make you love your own children all the more. Matthew was born on August 13th in Gloucester Royal Hospital after a trouble free pregnancy and a straightforward labour. He was my first baby. He was absolutely gorgeous with a lovely head of dark hair, and weighed a healthy 7lb 3oz. We were discharged from Gloucester and returned to Stroud the same day and spent four happy and relaxing days being cosseted in Stroud Maternity Hospital.

When Matthew was ten days old I noticed he was breathing with fast shallow breaths and making little grunting noises. He seemed to be very sleepy and had lost interest in feeding. I mentioned this to Esther, my Midwife, who suggested we go up to Stroud Hospital and see the duty doctor. Two hours later, we were rushed to Gloucester by ambulance where the paediatrician ran a battery of tests on our now obviously poorly baby. Matthew was found to have three major heart defects. The next day we were transferred to the intensive care unit at Bristol Children's Hospital.

Matthew had two six hour operations within a week in an attempt to rectify the problems with his heart. An "arterial switch", to correct the fact that the two main arteries which come out of the top of the heart were the wrong way round; an operation to correct a narrowing (coarctation) of the aorta, the main vessel which supplies oxygenated blood to the body; and repairs to a hole in the wall between the bottom two chambers of the heart (ventricular septal defect). All three are now well-established surgical procedures used to correct congenital heart defects on newborn babies. But we did not know at the time that it is rare that all three procedures are carried out simultaneously.

Sadly, the second operation was not fully successful. The surgeon was unable to close the hole in the heart and Matthew was just too small to cope with a major blood transfusion and two sessions on a heart bypass machine. Two days after the operation he began to fail rapidly. He died in his loving father's arms in the morning of Sunday 7th September. He was 25 days old. Strangely, he died at the same time he was born; 9.46am.

Those two weeks we spent in intensive care with him were the most frightening we have ever experienced. We lived minute by minute and had our hopes raised and dashed countless times. Our lives, which had been so happy and so full of promise two weeks earlier now seemed bleak and grey. I would wake up every morning and think "my baby died". I wept and wept until I felt no more tears would come, but they did.

I was touched by the number of people who wrote to share their own experiences of miscarriage, stillbirth and cot death. Other people had gone through worse. We had experienced the joy of his birth and ten happy and innocent days with him. All our close family had seen the baby. He had been beautiful and loved. We had some lovely photographs and happy memories to look back on. We were proud of our son.

You never "get over" the death of a child, you just learn to live with your grief. At first I thought about him, his birth and his death, every waking minute. Then I realised that the sad and the frightening memories were fading. I still carry him with me everywhere I go and have a clear image in my mind of his big, blue eyes opening wide before he snuggled up to my breast for a feed. But the fear and raw grief that ruled my life five months ago has now gone.

I often ask myself the question "why". Why did such an innocent little life have to end so quickly? We don't know why Matthew's heart was so badly mis-formed. All we do know is that there was no genetic cause. A baby's heart is fully developed by eight weeks gestation. Sometimes things just get organised the wrong way round. Eight in a thousand babies are born with a heart defect, but this is often a small hole which closes over a time and does not require surgery. We were the one in a thousand chance where major surgery is required.

Heart problems can be detected by ante natal screening at 18 weeks gestation, but a visit to a regional cardiac centre (i.e. Bristol) is required and the scan needs to be done by a consultant paediatric cardiologist. But this screening is not usually offered unless there is a history of heart problems in the family. Cardiac problems are not always apparent at birth, and it can take up to the first two weeks of life before the symptoms manifest themselves.

We have learned a lot about life, and death. We now have immense sympathy for those who have sick children, or who have lost a child. Our most supportive friends have been those who have experienced serious illness and bereavement themselves. The best way to cope is to let grief take its course. There is no right or wrong way to mourn. To weep, to talk. Grief may take a while to emerge, and may appear as anger or jealousy.

Coping with other people's attitudes has been difficult. In the 1990s we are so removed from death, and the death of a baby is a genuine shock to everyone. Some people think that referring to the baby will make you upset. But what I want more than anything is for people to say that they are sorry. I need people to acknowledge my son's short life, and for my role as a mother to be acknowledged. To fail to mention Matthew is to deny his existence, and that hurts. I am proud to show people my lovely photographs. I'm pleased to tell them what happened. I appreciate being asked how I am, and am I coping? If I don't want to open my heart, I won't, but sometimes I do need to talk.

Fathers too, need remembering. The traditional male role is to be strong and to provide support. They are forced to continue their daily roles as normal. But sorrow may creep up at unexpected times and take them unawares. Men do feel that lost promise very deeply. The sight of my own father and brother weeping at Matthew's funeral was hard to bear.

We hope we will have other children, and that they'll be strong and healthy. I'm 36 now, and conscious of the biological clock ticking away. I'll worry every day of my next pregnancy. I'm now so aware of all the things that can go wrong. But we'll never forget our first son, and we'll tell his brothers and sisters all about him. He'll always be part of our family, and our lives.



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