A few weeks ago there was a heart-breaking story in the weekend papers about the ethics of providing medical support to extremely premature babies. It was a harrowing and yet fascinating and important read about what goes on for those poor families who are desperately unlucky enough to have babies born in the ‘grey zone’. This is the term used to describe the three-week span in an unborn baby’s life between 23 and 25 weeks gestation when survival is technically possible but the outcomes are horribly uncertain.
According to the article by Richard Guilliatt, “50% of the babies born at this gestation will die, and those who live can often be afflicted by cerebral palsy, intellectual disability or blindness. Some doctors refuse to resuscitate such fragile infants.”
It goes on to talk about the King Edward Memorial Hospital for Women in Perth, who have Australia’s most aggressive policy of supporting ’23-weekers’ if their parents request it and describes in detail the case of Annie McFadden who was born a few hours after her mother’s pregnancy entered its 23rd week. She weighed 570 grams. The list of complications she suffered and the medical procedures she endured are horrifying enough to read about let alone live through. But she did. Two and a half years later, Guilliatt writes, Annie’s future is still unclear. Her speech is stuck at the level of a nine-mont-old and she is blind. But she tears around and laughs and plays with her younger sibling (who was born at full gestation).
I learnt so much reading this story….about the outcomes for premature babies, the mixed feelings of many medical professionals who are involved in their care (some believe it is wrong to subject a baby to painful medical procedures to prolong a life whose quality could be very low or very short, others feel passionately the opposite way). I also shed some tears.
A week or so before I read this article, I received an email pointing me to a devastating story about another family who experienced a similar start to their story but with a very different ending. The Daily Mail reports…
They ignored her pleas and allegedly told her they were following national guidelines that babies born before 22 weeks should not be given medical treatment. Miss Capewell, 23, said doctors refused to even see her son Jayden, who lived for almost two hours without any medical support. She said he was breathing unaided, had a strong heartbeat and was even moving his arms and legs, but medics refused to admit him to a special care baby unit.
Miss Capewell is now fighting for a review of the medical guidelines. She said: ‘When he was born, he put out his arms and legs and pushed himself over. A midwife said he was breathing and had a strong heartbeat, and described him as a “little fighter”. I kept asking for the doctors but the midwife said, “They won’t come and help, sweetie. Make the best of the time you have with him”.’
She cuddled her child and took precious photos of him, but he died in her arms less than two hours after his birth. Miss Capewell, who has a five-year-old daughter Jodie, went into labour in October last year at 21 weeks and four days after suffering problems during her pregnancy. She said she was told that because she had not reached 22 weeks, she was not allowed injections to try to stop the labour, or a steroid injection to help to strengthen her baby’s lungs.
Instead, doctors told her to treat the labour as a miscarriage, not a birth, and to expect her baby to be born with serious deformities or even to be still-born. She was shocked to discover that another child, born in the U.S. at 21 weeks and six days into her mother’s pregnancy, had survived.
Amillia Taylor was born in Florida in 2006 and celebrated her second birthday last October. She is the youngest premature baby to survive. Miss Capewell said: ‘I could not believe that one little girl, Amillia Taylor, is perfectly healthy after being born in Florida in 2006 at 21 weeks and six days.
Experts on medical ethics advised doctors not to resuscitate babies born before 23 weeks in the womb, stating that it was not in the child’s ‘best interests’. The guidelines said: ‘If gestational age is certain and less than 23+0 (i.e at 22 weeks) it would be considered in the best interests of the baby, and standard practice, for resuscitation not to be carried out.’
But while survival rates for those born after 24 weeks in the womb have risen significantly, the rates for those born earlier have barely changed, despite advances in medicine and technology.
Medical experts say babies born before 23 weeks are simply too under-developed to survive, and that to use aggressive treatment methods would only prolong their suffering, or inflict pain.
The guidelines were drawn up by the Nuffield Council on Bioethics after a two-year inquiry which took evidence from doctors, nurses and religious leaders.
But weeks before they were published in 2006, a child was born in the U.S. which proved a baby could survive at earlier than 22 weeks if it was given medical treatment.
Amillia Taylor was born in Florida on October 24, 2006, after just 21 weeks and six days in the womb. She celebrated her second birthday last year.
Doctors believed she was a week older and so gave her intensive care, but later admitted she would not have received treatment if they had known her true age.
Her birth also coincided with the debate in Britain over whether the abortion limit should be reduced.
Some argued that if a baby could survive at 22 weeks then the time limit on abortions should be reduced.
The argument, which was lost in Parliament, followed a cut to the time limit in 1990 when politicians reduced it from 28 weeks to 24 weeks, in line with scientific evidence that foetuses could survive outside the womb at a younger age.
However, experts say cases like Amillia Taylor’s are rare, and can raise false expectations about survival rates.
Studies show that only 1 per cent of babies born before 23 weeks survive, and many suffer serious disabilities.
This is one of those subjects I couldn’t possibly claim to have a strong opinion about. Just deep empathy and admiration.
I am genuinely in awe of the strength, courage and spirit of anyone who has had a premature baby as well as the doctors and nurses who work with them every day. Heroes, every one of them.
There are many MM readers who have had given birth prematurely. Amanda ‘bugmum’ has written about it here. Sharpest Pencil has written about it here.
But I’m interested to know what you think…..
Top Comments
My son was born at 26 weeks gestation. At his lowest weight he was 978 grams. We spent from 12th November until 26 January in NICU. He had numerous complications and although I was very strong throughout, I did lose 'it' completely the day I saw him having a lumbar puncture. He was the most incredible little fighter and although every day was a roller coaster he managed to get through it and wake up the next morning ready to take on whatever the nurses and doctors handed out to him.
When we were finally transferred to a hospital close to home they had to put a security guard at the door of the NICU because people kept sneaking in to see him.
With so many awful medical problems that could have befallen him, he has grown up a fit and healthy young man.
I would also love to tell you about my other son, born at almost 22 weeks within a Private Hospital. I was by myself for varying reasons (husband fishing off FNQ) and delivered the baby with no other person in the room. Nurses were very busy that night. I delivered my son by myself and when the doctor arrived he asked me, "was he alive when he was born?" I'm not sure about that one as I was drugged to the hilt and it is all a bit hazy. Not a nice story but I got to hold that perfectly formed child for hours before I was strong enough to hand him over. We had to have a funeral for him as is law. Not a time I will forget.
Then there was the son I delivered at 18 weeks gestation...taken away after birth. It hasn't been an easy road for me. I am thankful every day for my beautiful 14 year old son who fought and won his battle. He was the middle child and is often told about his brothers.
you are amazing
Sarah I cannot even begin in my wildest nightmares to imagine the pain and trauma and devastation you have suffered and are still suffering. You are right. Nobody has a clue how you were feeling. Only you are walking that horrendous path of grief.
And you're doing it alone which must be the hardest thing in the world.
On behalf of the Mamamia community, may I wish you all the strength and sympathy there is.
And please know that your story and the story of Jayden has touched so many women around the world. Please hang in there.