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Is It Always Right to Keep Premature Babies Alive?

Posted on: Tuesday, 14 June 2005, 18:00 CDT

These mothers both gave birth four months early. One says it was cruel not to let her son die sooner. The other believes every baby must be given a chance. In heartbreaking detail, they explain their very different viewpoints

LAST week, Baroness Warnock, a medical ethics expert, accused doctors of being 'competitive' in keeping tiny, premature babies alive and called for new rules setting a minimum gestation period at which babies could be treated.

The comments have sparked a national debate. Here, two mothers of premature babies share their very different views with THEA JOURDAN.

JUDY HILTON, 38, an NHS orthodontist, lives in Banbury, Oxfordshire, with her husband John, 40, head of engineer design for Renault Formula One, and their two-year-old son Oscar. In April 2001, Judy gave birth to her first child, Oliver, after a pregnancy lasting 24 weeks. She says:

THEY say premature babies feel no pain, but watching Oliver in his incubator, struggling to breathe and hooked up to wires and every kind of tube, I knew that he was suffering terribly. Fluid building up in his lungs was drowning him, and the ventilator which was helping him breathe was damaging the delicate tissue in his airways.

There was also a big bruise on his arm where a tube attached to a drip had leaked fluid into his skin.

It was horrendous to watch.

He was so tiny - the size of a doll - and my husband and I felt so helpless. We had wanted a baby so much, but Oliver was in so much pain that, in the end, it didn't seem fair trying to keep him alive.

I'd fallen pregnant very soon after John and I married in September 2000. At first everything went smoothly, but then, almost four months before Oliver's due date, I was at work when I realised I couldn't feel the baby moving.

I was concerned, so I went to see my GP, who checked the baby's heartbeat.

It was fine, so I went home and started cooking dinner.

It was then that I felt agonising pains and realised I might be in early labour. I was petrified - I knew it was far too early.

John and I rushed to our local AE and they did everything they could to stop the labour progressing, but it was useless. With the birth inevitable, I was taken to the John Radcliffe hospital in Oxford, which has a premature baby-care unit.

I arrived at 7pm and 12 hours later Oliver was born naturally.

I was relieved when he made a little mewing sound when he was born. But he was so tiny - 1lb 6oz - that the doctors warned us to expect the worst.

Oliver was rushed away immediately and I was terrified about what would happen. I wasn't allowed to see him for the first 24 hours while the doctors put him on a ventilator and tried to help him breathe.

When I finally saw him, he was in an incubator and covered in wires. The consultant warned us that he had all kinds of health problems. Even if Oliver made it through the first days, his progress would be slow and difficult.

One of the main problems was that a blood vessel - which in the foetus takes blood between the lungs and the heart - was not closing properly as it should after birth.

This meant the blood pressure in his lungs was too high and fluid was building up.

Apparently, it's a common problem with early babies.

One health problem triggered another. Because Oliver could not breathe on his own, he needed the ventilator, which was irritating his airways. He also needed a tube in his arm for the drip and constant blood transfusions.

held him only three times in his short life. I hardly dared touch him because he was so fragile, and when I did cuddle him, it seemed to make it harder for him to breathe.

As the days and then the weeks went by, all I could do was stand by the incubator, watching him struggling, while John tried to comfort me.

When Oliver was three weeks old, we were told he'd had a bleed in his brain so was likely to have cerebral palsy. There was also a strong chance he would be deaf and have sight problems.

John and I knew that if Oliver survived, his life would be unbelievably difficult. We agonised over whether it would be kinder to let him die. There was always the faintest hope that he might pull through unscathed, but it was looking more and more unlikely.

Eventually, we both felt he had suffered enough and we asked the doctor if his treatment could be stopped. It was a heartbreaking decision for any parent to have to make, but it didn't seem fair to keep him alive any longer.

The terrible thing was that when I finally managed to tell the doctor what we wanted to do, she suggested I had not bonded with my baby and she would go to court if I tried to stop her treating Oliver.

WE WERE appalled.

I loved Oliver and I wanted what was best for him - no matter how painful the decision was for us to make. I think doctors sometimes let their professional pride get in the way of their good judgment.

The nurses were much more sympathetic. They understood that doctors make decisions which they don't have to live with. It is the parents who deal with the problems two years, five years, 20 years down the line.

After a month or so, Oliver did make some progress and he came off the ventilator for a few days. I even started to hope that he might come through it after all.

But on June 1, when Oliver was five weeks old, he suddenly took a turn for the worse.

Like many very premature babies, he had picked up an infection. By then, he'd had so many blood transfusions they couldn't find a vein to put in a tube for the antibiotics. They told me that I had to leave the room while they tried to administer the drugs.

Soon he had raging septicaemia - an infection of the blood. We could only watch as his hands and feet turned black as the tissue died.

Oliver was in such a terrible state that I called in the doctor again and insisted that enough was enough. I honestly felt the hospital was just experimenting with my child. When she saw him lying there with his blackened fingers, she finally agreed that reviving him would be cruel.

They said they would turn off the ventilator, which would mean certain death for Oliver. It was awful for John and me, but we knew our son had suffered enough.

We couldn't bear to be there when they turned it off, so we waited in a room nearby.

Aftwerwards, a nurse came to us, carrying Oliver in her arms.

He had died immediately the ventilator was switched off.

We held him and cuddled him. He looked so peaceful at last, and we both knew we'd made the right decision.

As much as we loved Oliver, I think it's crazy to keep babies alive who are going to suffer so much and lead a short life blighted by hideous health problems.

I would go further than the suggestion of a 24-week minimum. I would say babies shouldn't receive intensive treatment before 27 weeks. This is when they have a good chance of surviving and having a good quality of life.

The decision should certainly be taken away from parents. When you are a mother, you will do anything to keep your baby alive, even though it is not fair on them.

Oliver suffered so much. I think it was wrong to keep him alive. He should have been allowed to die when he was born.

I became pregnant again less than a year later, and Oscar was born in October 2002.

He was also premature - but this time we got to 32 weeks, and at 4lb 7oz he was strong enough and big enough to survive. He needed just a little support with extra oxygen in the early days. Now Oscar is a healthy toddler with bags of energy.

John and I remember Oliver with much love, but we know he is better off not suffering any more.

CAROLINE NEWMAN, 39, an advertising researcher, lives in North London with her husband, Stephen, 40, an engineer, and their children, Emily, five, and Joe, two. In June 1999, Caroline gave birth to a stillborn son, Nathan, after a pregnancy that lasted 22 weeks. Emily was born after 23 weeks in the womb.

Caroline says:

WHEN I look at my little girl, who is so articulate, bright and beautiful, I can't believe she was that tiny little baby who was so desperately ill.

She weighed 1lb 4oz when she was born. Her hand was the size of my thumbnail and her skin was so transparent you could see all her organs. The doctors warned us that she would struggle to survive.

But our little girl is proof that you can't draw an arbitrary line at 24 weeks and give up hope on babies born before then. If that was the case, Emily would be dead.

My husband and I always wanted to have children and I became pregnant soon after our marriage in January 1999. Unfortunately, I went into labour in the 22nd week and our son Nathan was stillborn.

We cuddled him, dressed him and took pictures, which are extremely precious to me, but then we had to let him go. It was devastating, particularly because we did not know why it happened. The doctors thought I might have an incompetent cervix, which means the neck of the womb opens too early.

I wanted to try again. I thought what happened with Nathan must have been a horrible fluke and I just hoped it would not happen again.

Just six weeks after his death, I was pregnant again with Emily. I was both overjoyed and terrified.

I arranged to have a scan of my cervix every fortnight at a private hospital to check everything was going well. It was at the 17-week scan that the technician told me there was a problem. My cervix was dilating. I was terrified I was going to lose another baby.

That night, I had emergency surgery to stitch the sides of the cervix together. It was frightening but the procedure seemed to work for a while, though I had to spend most of my time with my feet up.

But contractions started at 23 weeks. The doctors tried to slow down the labour with drugs, but nothing seemed to work. It was inevitable I was going to give birth.

Emily wriggled when she was born naturally on January 19, 2000, but she was clearly very ill. I was later told I had a massive infection in my womb, which is why I gave birth so early. The infection could have killed me and the baby.

No one knows why this happens, but it seems some women are predisposed to getting infections in the uterus.

As soon as she was born, Emily was taken away and put on a life support machine. I didn't get a chance to hold her and didn't even see her for another 24 hours.

I was certain she was going to die. I could not believe such a tiny scrap of life could pull through.

Emily's lungs were so weak that at times she would stop breathing and go blue. The machines would all start bleeping as her heart started to slow down. I felt so helpless as I stood over her cot.

SHE HAD blood transfusions almost every day and tubes going in everywhere.

Emily was screaming - her mouth was opening and her face screwed up - but she made no sound because she was on a ventilator. It still gives me nightmares to think of it.

There were just a couple of times when I thought she was suffering too much and should be allowed to die.

It was so hard to see her in pain.

When she was a month old, she had a small bleed on the brain and the doctors warned us that she could have cerebral palsy. We also faced the fact that she might be blind in one eye or asthmatic.

It was hard to think of her growing up with health problems, but we were sure she could still have a good life. After all, many babies born at full term have problems.

I'm so thankful that we never gave up on her. The first good news came when a specialist examined her eyes and said she would not be blind after all. The problem was correcting itself.

Gradually, Emily began to gain weight and started responding to our voices and faces. When she finally left hospital after five- anda-half months, she was a bouncing baby. The nurses were all incredibly proud of her. I think she is one of their greatest success stories.

She's five years old now and has no health problems or disabilities.

She's above average height, average weight, top of her class, bright and lively.

She is somewhat sensitive and still finds it difficult to be touched, though - perhaps because she was handled by so many people when she was in hospital.

Two years ago, I had my son, Joe.

This time, the pregnancy was normal. We are proud of our children and our family is complete. I know it does not always work out, but I could never condone a change in the law which would deny the chance of life to a child like Emily.

TOMMYS, the charity for people who have experienced premature birth, stillbirth and miscarriage, can be contacted on 0870 777 3060.

Donation line: 0870 777 7676.

Source: Daily Mail; London (UK)

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