Born at 23 Weeks 6 Days: What Decides the Baby's Fate Isn't the Doctor, It's the Baby
In the gray zone between 22 and 25 weeks, medicine has no answer, so parents read "I want to live" into a single grasp, a single opened eye — when the movement is really just a reflex.
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The argument · tap a timestamp to hear it
The 24-week line was drawn by a court
Nita Farahany explains that in 1973, when Roe v. Wade came before the Supreme Court, the justices wanted a limit to place on abortion rights, so they chose "viability" — whether a fetus can survive outside the womb. The best guess medicine could offer at the time was 24 weeks, because that is when the lungs begin forming air sacs and autonomous breathing becomes theoretically possible. But it was only theory; no one had actually taken a fetus out at 24 weeks to test it. In practice, through most of the 1970s and 1980s, most hospitals drew the line at 28 weeks, because it is around 28 weeks that the lungs begin producing surfactant. Only when artificial surfactant, intravenous nutrition and ultra-small ventilators arrived in the late 1970s did the line get pushed back to around 24 weeks.
— Nita FarahaniThe three numbers the doctor gave: 53%, 20%, 80%
At 23 weeks 4 days, the doctors told Kelly and Tom the baby would be born within 48 hours. They gave them: roughly a 53% chance of death no matter what was done; roughly a 20% chance the baby would be completely fine; and the remaining 80% meaning a lifetime on a ventilator, brain bleeds, blindness or deafness. The doctors asked them to decide before the birth whether to "do everything." Because once you see the baby, it is very hard to say no. Tom said it was the worst night, that they worried they were "torturing this infant for nothing," and that the child would one day hate them for having been born.
— Tom FrenchThe nurse turned a yes-or-no question into a conditional one
NICU nurse Diane Loissel did not give them numbers. She told Kelly and Tom: this is not a yes or no decision. The baby could be born first — if she came out crying loudly and vigorous, they would fight with everything; if she came out blue and limp, they could stop, withdraw support, and hold her until she died. That way the decision was handed to the baby herself. The plan turned an unsolvable choice into "give her a chance first, and see how it goes."
— Diane LoisselParents see will; doctors see reflex
"The baby declared herself" is a phrase parents and staff used over and over. But the two sides understood it completely differently. What the parents saw was will and determination. Nurse Tracy Hullett said she deliberately used more neutral words, because a 23-week baby's cortex has almost no folds — the brain is basically smooth — and no one knows what it can think or feel. Keith Barrington was more direct: when a baby grips a parent's finger, that is the grasp reflex, and he never tells parents, because they will take it as a deliberate act. But perhaps it is precisely this capacity to "see will" that lets parents decide when reason alone cannot.
— Keith BarringtonThe neonatologist was fooled by a reflex too
Keith Barrington and his wife Annie are both experts on the ethics of extreme prematurity. Their own daughter was born at 24 weeks 5 days, weighing 720 grams, in the very NICU where he was director. Weeks later the baby developed severe complications and lay completely still for 36 hours, and they decided to let her go peacefully. But when he went back to the NICU to see her, he saw her lips moving — she was sucking on the pacifier the nurse had put in her mouth. He knew it was only the most basic brainstem-controlled reflex, nowhere near enough to survive on. And still he went back to his wife and said: we can't stop, I want to keep giving her a chance. He said that if he were more evidence-based, more rational, more scientific, he could probably have made either choice — but as a father, in that moment, he could not let go.
— Keith BarringtonShe opened her eyes, and the doctor chose surgery
Juniper's bowel perforated again; her blood pressure and oxygen crashed, and even 100% pure oxygen could not hold her. The surgeon refused to operate, calling it futile, and her blood pressure was too unstable — she might not survive the table; even if opened, her skin was thin as paper and might not be sewn back together. But the attending, Fauzia Shaquille, saw her suddenly open her eyes wide at the bedside and stare straight at her. She said that usually a baby this critical has no response at all, because every breath is a struggle. And for her to open her eyes and look at us with almost no blood pressure and almost no oxygen was a powerful statement: I am still here, don't give up. So she persuaded the surgeon: without the operation she will certainly die; with it she may die, but there may be a tiny chance.
— Fauzia ShaquilleWhen they opened her up, everything was falling apart
The surgery ended far faster than expected, and a nurse led Tom and Kelly into a small windowless conference room. The surgeon told them that when she opened the baby and touched the bowel with a probe, everything was "falling apart, falling apart." Juniper survived the surgery, but that was all. Tom said he felt certain the baby could not live until morning. Driving, a thought hit him: what if I never finish reading her this book? What if she never knows how Harry, Hermione and Ron end up? That thought pulled in all the others — everything she would never know. He had to pull over to the side of the road and completely broke down.
— Tom FrenchFifteen years on: she is alive, but the cost is elsewhere
Juniper is 15 now and about to start high school. She was pulled out of math class for the interview and was happy about it. She said school has always been hard, that kindergarten through eighth grade went very slowly, that she was very lonely and found it hard to make friends. She is small, and classmates teased her about it. Physically she still has a kidney problem and cannot eat too much salt. Harder still is the emotional side: she has PTSD, anxiety, and trouble controlling her emotions. But she says she doesn't think about it much, just lives like a normal person. A few years ago her mother took her to a horse farm, and she fell in love with riding; she says horses taught her to control her emotions — when you are angry the horse feels it and loses control, so she had to learn to be calm. She now has two best friends, and she says the daughter her mother described back then is her.
— JuniperIn their own words · checked verbatim
To have a child is to embrace a future that you can't control.
Tom French5:17
But you can give your baby a chance and see how it goes.
Diane Loissel19:47
I maybe try to keep things a little bit more neutral than talking about their will to live. Because, you know, a baby at 23 weeks barely has folds on the outside of its brain. Its brain is still smooth for the most part. So who knows what it's capable of thinking or feeling?
Tracy Hullett30:02
That the babies have a grasp reflex. I never tell a parent that because they think it's an intentional movement.
Keith Barrington31:05
I went back to Annie and said, we can't stop. I really need to continue and give her the chance.
Keith Barrington33:10
For her to just open her eyes and look at us, it was a very powerful statement that I'm still here. I'm here. I am still here. Don't give up.
Fauzia Shaquille44:38
She has no idea that one day, you know, she'll just be held and rocked. And we'll take her out for ice cream. And she'll play with the dog. And I just wondered, like, what is she fighting for?
Tom French51:52
Figures
| Juniper's gestational age at birth | 23 weeks 6 days | 20:51 |
| Death probability given by the doctors | 53% | 15:37 |
| Probability of being completely fine given by the doctors | 20% | 15:37 |
| Gestational age of Keith Barrington's daughter at birth | 24 weeks 5 days | 31:05 |
| Birth weight of Keith Barrington's daughter | 720 grams (1.5 pounds) | 31:05 |
| Total days Juniper spent in hospital | 196 days (about six and a half months) | 54:54 |
| Cost of Juniper's four RSV vaccine shots | $14,000 | 57:59 |
| Juniper's age at the time of the interview | 15 | 1:01:01 |
Glossary
- viability
- The medical and legal threshold at which a fetus can survive outside the womb, usually set at around 24 weeks.
- surfactant
- A fluid produced by the lungs that keeps the air sacs from collapsing and sticking together between breaths; production begins at around 28 weeks.
- NICU
- The neonatal intensive care unit, a ward specializing in the care of premature and critically ill newborns.
- micro-premie
- A premature baby born at an extremely early gestational age and extremely low birth weight.
How to listen
Listeners interested in medical ethics, law and the boundaries of life; families going through, or who have gone through, a micropreemie decision; anyone who wants to understand how the viability line walked out of the courtroom and into the NICU.
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