The 21 Week Controversy

A Mom in the UK is taking on a medical council after her baby, born at 21 weeks 5 days, was refused medical assistance following his early arrival.

Sarah Capewell is now fighting for a review of the medical guidelines.

During an interview with the Dailymail, Sarah said medics allegedly told her that they would have tried to save the baby if he had been born two days later, at 22 weeks.

In fact, the medical guidelines for Health Service hospitals in the UK state that babies should not be given intensive care if they are born at less than 23 weeks.

The guidance, drawn up by the Nuffield Council, is not compulsory but advises doctors that medical intervention for very premature children is not in the best interests of the baby, and is not ‘standard practice’.

Sarah’s re-count of Jayden’s birth is heartbreaking. She recalls that the newborn ‘put out his arms and legs and pushed himself over’.

A midwife who has assisted her said he was breathing and had a strong heartbeat, and described him as a “little fighter”.

Through the whole ordeal, the new mom 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.

After suffering complications during her pregnancy, Sarah went into labour last October at 21 weeks 4 days.

Because she had not reached 22 weeks, she was refused 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.

Jayden arrived a few hours later and managed to survive for two hours.

Sarah has now taken her fight to the internet and set up a website in Jayden’s memory.

Many people have commented with support, but the most poignant comment came from an NICU doctor.

I am a doctor who works in a NICU and have done so for some years. I try to give every baby a chance, but I am also a realist. A baby born at 22/40 has no chance of surivival. Indeed, even at 23 weeks, there is only about 20% chance of survival and the majority will have significant disability. Instituting intensive care would be a painful, but brief prolongation of a life for a child born at 22 weeks. Jayden’s picture shows him to be a lovely and well formed baby, but still quite foetal. We would not be able to put drips in, and I suspect putting a breathing tube without damaging his fragile airway would have been impossible. I am truly sorry for your loss, but I believe your campaign is against the best interests of these children.

While researching her cause, Sarah 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.

She 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.

‘Thousands of women have experienced this. The doctors say the babies won’t survive but how do they know if they are not giving them a chance?’

Personal note: As many of you know, my son was born at 24 weeks 1 day weighing 675gms. Before his arrival, I spent quite a few weeks in the hospital on bed rest trying to keep him safe. At 23 weeks 5 days, I went into labor and was told that doctors would not resuscitate the baby if he arrived on that day. Lucky for me I was able to stop the contractions and hold off the delivery. Having him at 21 weeks 5 days would have never been an option in this Province.

Secondly, I believe that Sonya Taylor, Amillia Taylor’s mom told the doctors she was further along than she was in order for them to give her daughter medical care.

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Thank you to reader Nadia

About the author

Lisa Arneill

Founder of Growing Your Baby and World Traveled Family. Canadian mom of 2 boys, photo addict, lover of bulldogs, and museumgoer. Always looking for our next vacation spot!


  • Okay this is tough. I am the mother of a child that was born at exactly 24 weeks. He spent the first nine months of his life in the NICU before coming home. He since then has spent a LOT of time in hospital because of his crappy lungs, reflux and undiagnosed cyanotic episodes.

    He is severely disabled, does not eat orally, does not sit/talk/walk…he is considered deaf/blind. He is the LOVE of my life.

    I am also the mommy to an angel. He was born at 18 weeks 4 days.

    I truly am sorry for the loss of your son Jayden, but I really disagree with what you are trying to do here. If hospitals/doctors started to save babies under 23 weeks there would be so much more suffering. It just would not be fair to those poor babies.

    The guilt that I still have to this day because of my sons NICU stay is huge. Those babies go through painful things every single day. Even changing their diaper or bed is painful.

    For people that have never lived through the NICU stage it is easy to judge doctors that they are not doing the right thing when they let babies die. However I do not think babies under 23 weeks should be saved at all. The chances of them surviving is next to nothing. As for the case of little Amelia, her mom had told the doctors that she was further along than she was to save her daughter. And also, studies show that black girls do the best in the NICU, followed by black boys, then white girls and white boys are called “wimpy white boys”.

    If my second son was born at 22 weeks I never would have asked them to help him. It would just be totally unfair to him. Even 23 weeks I wouldn’t have. This does not make me a bad person, but rather one that KNOWS what prematurity is about.

    Just reading through some of the comments, I would be able to pick out the parents of preemies/doctors/nurses compared to those who have never lived this horror. The people who haven’t lived the horror usually think what they did to you is uncalled for.

    Again, I am sorry for your loss, but I really don’t agree with this petition. If things were changed there would be so many MORE babies that would suffer endlessly and for no good reason.

    My son still suffers to this day and he is four years old. It is heartbreaking and very difficult to deal with.

  • My little 1 pound 1oz 22 weeker Josie stayed in the NICU until she was almost 9 months old and now my little girl is a thriving 10 month old in my opinion every baby should at least be evaluated and not judge them by there age!

  • This is a heart breaking subject no matter which side you take. But i think we at least all agree on the fact that we’re on the babies side. Do we really want to make an exact week and day that we refuse to even to to save a baby? I truly believe every baby is different,and they really are fighters. It used to be that a premature baby even over a month early had little chance. Science has come so far. As sad as it is for the babies born early that end up with horrible lifelong medical problems,deaf/blind as one mother even said.. there have also been babies that defied those odds and were not among the statistics. That were born at 24 Weeks or sooner and are thriving..
    sustaining the life, fighting for the life of a baby should be on a case by case basis. The parents should be told the risks and odds and realities but to just dismiss a baby and even tell a parent to consider it a miscarriage,especially when the baby is fighting to survive still,is horrific.
    I am a mother myself. I had my son about a month early. when my water broke about a month early they told me he might not be able to breathe on his own. So they treated me with anti biotics the next two days while they gave me the steroid to increase his chances.. He was born 2days later as they wanted, crying on his own the second he was out. He was 6lbs 2oz. Breathing fine. Scored a nine on the apgar test. He was healthy. yet spent the first month of his life in the NICU. He had to be weaned off the pain medication that i unfortunately have to take for severe back pain from degenerative disc disease. So i watched as my healthy baby fought withdrawl symptoms, and had to be weaned off with morphine. So i have done the NICU thing.. My baby was early,but thankfully not too much so. I later was told it was only a 3% chance he wouldnt be able to breathe, or would have trouble, and that the steroid at his gestation put it down to 1%. But just like he was not part of those percentages, babies that are very premature have beaten the odds. Being a parent you end up making tons of hard choices. And i think trying to save their baby or letting go if need be should be partly at least up to the parents. With caring doctors fighting for whats best for each baby.Obviously there are some things we cannot do, some we cannot, or even should not save. But take the time to examine the baby and decide its chances then, especially when only days separates it from a baby worth trying to save.

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