"Wait and See": Living With Uncertainty in the First Two Years After HIE
After HIE, most parents hear "wait and see". Doctors often can't say how a baby will develop, because a young brain keeps changing and two similar scans can lead to very different lives. Follow-up usually continues to at least two years, and some effects only show at school age. But waiting doesn't have to mean doing nothing: cerebral palsy can usually be identified before six months, and early therapy helps. This guide explains why doctors won't predict, what happens when, how to prepare for appointments, and how parents learn to live alongside not knowing.
Doctors often can't say how a baby with HIE will develop, because the young brain keeps changing and the same MRI can lead to different outcomes. Follow-up usually continues for at least two years, and some effects, such as with learning, attention or speech, show only at school age. Cerebral palsy, or a high risk of it, can now usually be identified before six months' corrected age, so "wait and see" should never mean waiting for help.
Your follow-up calendar
Enter your baby's due date to see roughly when each check falls.
Use the due date, not the birth date: checks are timed by "corrected age". Nothing you enter leaves this page.
- 1Before you go home
Follow-up booked
Every cooled baby should be booked into a growth and development (high-risk infant) follow-up clinic, usually until at least two years of age.
Ask: who is following up our baby, and when is the first appointment?
- 28 to 20 weeks after the due date
General Movements Assessment
A short video of your baby lying on their back, moving freely, scored by a trained assessor. Cerebral Palsy Alliance says parents can record the video themselves.
Ask: will our baby have a GMA, and who will score it?
- 3From about 3 months corrected
HINE check
The Hammersmith Infant Neurological Examination: a structured check of posture, movement, reflexes and alertness. A low score means a higher risk of cerebral palsy.
Ask: what was the HINE score, and what does it mean?
- 44 to 6 months corrected
The early diagnosis window
Combining the MRI, GMA and HINE, cerebral palsy or a "high risk of CP" can usually be identified before six months corrected age, so CP-specific therapy can start. Trouble holding the head up past four months is a sign to raise.
Ask: is our baby at high risk of CP, and can therapy start now?
- 59 to 12 months corrected
Sitting, reaching, first-year review
Not sitting without support past nine months is another sign Cerebral Palsy Alliance lists to raise with a doctor. Many clinics hold a first-year review around now.
Bring: your notes and short videos of anything you're unsure about.
- 62 years corrected
Two-year developmental assessment
A formal assessment of movement, thinking, language and behaviour. For many families, this is when the clearest picture so far comes together.
Ask: what follow-up continues after two, and who do we see for school readiness?
- 7School age, 5 to 8 years
Learning, attention and behaviour
Some effects of HIE, such as with learning, coordination or emotions, only show at school, even in children without cerebral palsy. Extra support at school helps.
Tell the school and your GP about your child's birth history.
Typical timings from Cerebral Palsy Alliance, the Royal Hospital for Women HIE guideline and published research. Your clinic's schedule may differ: follow your team's advice.
"Everyone kept saying, 'Enjoy him, they grow so fast.' I couldn't. I was too busy watching him.
Every nappy change, I checked his hands. Every feed, I counted how long he looked at me. I had a note on my phone with the date of every new thing he did, and a second note with everything that worried me. The second note was longer.
At his four-month check, the physio asked me how I was going. I started to say 'fine', and then I couldn't stop crying. I told her I'd spent four months waiting to find out if my son was broken. She put her clipboard down and said, 'He's not waiting. He's just being a baby. You're the one who's waiting.'
I think about that a lot."
A composite story, drawn from the experiences of many families I have worked with, combined and changed so that no one can be identified. It does not describe any individual client.
If you are in the long wait now, I'm so sorry. Of all the questions parents ask after HIE, "when will we know?" is the one that comes up most, and the one with the least satisfying answer. In the parent communities I read, it comes up in almost every conversation: nobody can tell us anything. How long until we know? I can't enjoy my baby.
This guide won't give you a date when you'll know. But it will explain why nobody can, what is actually happening in the meantime, and how to make the waiting a little more active and a little less lonely.
I am a medical negligence lawyer, not a doctor. I have practised since 2013 and worked on many hundreds of claims, including for families after injuries at birth, many of whom came to me in exactly this stage, unsure whether anything was "wrong" yet. My doctoral research looked at patterns of failure in medical negligence. Everything clinical here is drawn from, and checked against, the guidelines and research listed at the end. Your baby's own team is the right source for anything about your baby.
Why the doctors won't predict
It can feel like the doctors are hiding something. Usually, they aren't. They genuinely don't know, and the good ones are telling you so.
The Royal Hospital for Women's HIE guideline in Sydney puts it plainly. It says prognosis in HIE is "extremely unpredictable", partly because of the plasticity of a baby's brain, and instructs its doctors to "avoid certainty in prognostication". It also says babies with moderate to severe HIE remain at a 30 to 70% risk of death or disability even after cooling. A range that wide is an honest admission of how much is unknown.
Neuroplasticity · The ability of the brain to change its structure and connections in response to experience and injury. It is greatest in the first years of life.
In plain terms: a baby's brain is still being built. Other areas can sometimes take over work from injured ones, and how well that happens can't be seen on a scan in the first week.
Three other things make prediction hard. The MRI is a picture of one week, and, as my guide to reading the MRI and EEG explains, the scan and the baby don't always match. Many skills don't exist yet in a newborn, so problems with them can't show: you can't see a speech delay in a baby who isn't meant to talk. And some effects, especially on learning and behaviour, only become visible when life asks more of a child, at school.
What "wait and see" shouldn't mean
It shouldn't mean waiting for help.
Ten years ago, many families were told to wait until 18 months or two years to find out whether their child had cerebral palsy. That changed with research led by Australian cerebral palsy researcher Iona Novak, published in JAMA Pediatrics in 2017. It found that cerebral palsy, or a high risk of it, can be accurately predicted before six months' corrected age, using the MRI, the General Movements Assessment and the Hammersmith Infant Neurological Examination (HINE).
"High risk of cerebral palsy" · An interim diagnosis given when a baby's tests point towards cerebral palsy but it is too early to be certain.
In plain terms: it can sound frightening, but it is a door, not a verdict. Cerebral Palsy Alliance's guide for parents explains that the label exists so your baby can get therapy designed for cerebral palsy straight away, rather than general care while everyone waits.
So you can ask, at any appointment: has our baby had a General Movements Assessment? A HINE? Is our baby at high risk of cerebral palsy, and if so, can therapy start now? If your baby isn't already seeing a neurologist, Cerebral Palsy Alliance runs a free early diagnosis clinic for babies up to 12 months' corrected age, with clinics in Sydney and the Hunter. The NDIS early childhood approach supports children younger than 9 with developmental delay or disability, and you don't need to wait for a final diagnosis to ask. My guide to early intervention after HIE walks through it.
The follow-up calendar
The calendar above gives the usual timings. In words: every cooled baby should be booked into a growth and development follow-up clinic before going home, and the Royal Hospital for Women guideline says follow-up should continue until at least two years. Within that time, there are a few key points.
- 8 to 20 weeks after the due date: the General Movements Assessment, a short video of your baby moving freely, scored by a trained assessor.
- From about three months' corrected age: the HINE, a structured check of posture, movement, reflexes and alertness.
- Before six months' corrected age: the window in which cerebral palsy, or a high risk of it, can usually be identified.
- Around 12 months: a first-year review in many clinics.
- Around two years: a formal developmental assessment, often the clearest picture so far.
"Corrected age" means age counted from the due date, not the birth date. It matters most for babies born early, but it is worth using for every baby, because that is how the checks are timed. My guide to early signs, milestones and a cerebral palsy diagnosis goes through what to look for at each age. Cerebral Palsy Alliance lists, among its early signs to raise with a doctor, trouble holding the head up past four months and not sitting without support past nine months.
Making appointments count: notes and videos
Follow-up appointments are short, your baby may be asleep or grumpy, and the thing that worried you all week may not happen in the room. A few things help.
- Keep one note, not two. Jess had a note for good things and a note for worries. Try one running note with dates: what your baby did, what worried you, what you asked and what you were told.
- Film it. A 20-second video of the stiff kick, the hand that stays fisted or the feed that goes wrong is worth more than a description. Cerebral Palsy Alliance's guide says parents can even record the General Movements Assessment video themselves.
- Write your top three questions before each appointment, and ask them first.
- Ask for the letter. After each clinic visit, a letter usually goes to your GP. Ask for a copy.
- Keep a folder of discharge summaries, the MRI and EEG reports, clinic letters, therapy reports and receipts.
That folder will help every new doctor and therapist you see. If you ever want to understand what happened at the birth, it will help with that too.
"The neurologist said, 'We don't know yet.' And the physio said, 'He's doing really well.' For months I thought one of them had to be wrong.
I'm an engineer. I like knowing. I'd lie awake running scenarios, the good one and the bad one, as if I could work out which was true by thinking hard enough.
Somewhere around his first birthday, I realised they were both right. We don't know yet. And he's doing well today. Those two sentences can sit next to each other. Now, when I start running scenarios at night, I say both of them to myself, in that order, and then I try to go to sleep. Most nights it works."
A composite story, drawn from the experiences of many families I have worked with, combined and changed so that no one can be identified. It does not describe any individual client.
Is my baby out of the woods at one? At two?
Parents often say they were told they wouldn't be "out of the woods until school age". There is some truth in that, and it deserves an honest answer.
Many children who were cooled for HIE grow up with no lasting effects. But a study from Bristol in the UK, published in Archives of Disease in Childhood: Fetal and Neonatal Edition, followed children who were cooled for HIE and did not develop cerebral palsy, and compared them at six to eight years with children born without complications. As a group, the cooled children had lower average scores on IQ and motor tests and more emotional difficulties, and 34% needed extra support at school, compared with 5% of the comparison group.
Those are group averages, not a prediction for your child. The cooled group's average IQ was still within the normal range. But it explains why follow-up matters beyond two, why it is worth telling your child's school and GP about their birth, and why a toddler who is "doing fine" may still need support later. It is also why, as I explain below, the law often waits before putting a value on a child's injury.
Living alongside the uncertainty
This is the part no guideline covers. The parents I have worked with describe a few things that helped them.
- Separating "today" from "the future". Like Tom, many parents find it helps to answer two questions separately: how is my baby today? and what don't we know yet?
- Choosing what you read. HIE support groups can be a lifeline. They can also show you the best and worst outcomes in the same scroll. It's okay to mute, leave or take a break.
- Letting someone else hold the list. Some couples take turns being the "watcher" for a week, so the other can just be a parent.
- Getting support for yourself. Anxiety after a NICU stay is common, for mothers and partners. PANDA (1300 726 306) supports parents in the first year and beyond. My guide for parents who keep replaying the birth is about this too.
How the law looks at the waiting
Many parents assume that if they are going to ask questions about the birth, they need to wait until they know how their child is affected. Others assume that if their baby is doing well, there is nothing to ask. Neither is quite right.
Why a child's claim is often valued later. A claim for a child injured at birth is meant to cover what the injury costs them over their whole life: care, therapy, equipment, education support and lost earning capacity. You can't measure that properly in the first year, for the same reasons the doctors can't predict. So in serious cases, the final value of a child's claim is often worked out when the picture is clearer, sometimes years later. Any settlement for a child also has to be approved by a court, to protect the child.
Why that isn't a reason to wait for advice. The evidence about what happened is freshest now. Heart rate traces, equipment logs and staff memories don't keep forever, and time limits apply even to children's claims. They work differently from adults' and differ between states, so it is worth knowing where you stand early. Getting advice doesn't commit you to anything. Often the first step is just getting the records and having them looked at. Our guide to NSW time limits explains the general rules, and my guides to time limits and compensation for a baby's HIE claim and claims when your baby is doing well go further.
In my practice
Families often contact me for the first time in this stage, usually apologising. "I don't even know if anything's wrong yet." "He's doing really well, I feel bad even asking." "I just can't stop thinking about the birth."
There's nothing to apologise for. Wanting to understand what happened is not the same as wanting to sue, and it doesn't mean you think your child is broken. Often, in this stage, my job is just to help a family get the records and have them read by someone independent, so that whatever the next two years bring, they're not also carrying the question of why on their own. Sometimes the answer is that the care was good and this was one of those things that happens. That is worth knowing too.
Both/and: we don't know yet, and today is good
Both things are true. Your child's future is genuinely uncertain, and it is reasonable to watch, to ask, to push for assessments and to plan. And today, your baby is a baby: feeding, sleeping, looking at you, growing. You are allowed to enjoy them while you wait. Enjoying them isn't complacency. Worrying isn't failure. Most parents in this stage do both, every day.
The bigger picture
There is real reason for hope in the numbers. The Australian Cerebral Palsy Register's 2025 bulletin reports that the rate of cerebral palsy in Australia has fallen from 2.4 per 1,000 live births in 1997–1998 to 1.5 per 1,000 in 2015–2016, with provisional data suggesting the decline has continued, including among babies born at term. Cooling, better newborn care and earlier diagnosis are all part of that story. Earlier diagnosis has also changed the waiting itself: families who once waited two years for an answer can now often start targeted therapy in the first months. Our birth injury map shows where HIE sits among the other injuries that can happen at birth.
Support
- PANDA (Perinatal Anxiety & Depression Australia): 1300 726 306, or panda.org.au. For mothers, fathers and partners.
- Miracle Babies Foundation: NurtureLine 1300 622 243, 24 hours, including support after you go home.
- Life's Little Treasures Foundation: information and peer connection for families of babies who spent time in NICU.
- Cerebral Palsy Alliance: the early diagnosis clinic and family support, 1300 888 378.
- Birth Trauma Australia: birthtrauma.org.au.
- Our guide to finding support after birth trauma.
Jess's son is two now. She still keeps a note on her phone, but only one, and lately it's mostly things he says. "I wish I could go back and tell myself to put the phone down sometimes," she told me. "I'd still have watched him. I'd just have looked up more." Wherever you are in the wait, I hope you get some of those looking-up moments too. You don't have to carry the not-knowing alone.
With care,
Rosemary
Back to the guide: HIE after birth: a guide for parents
Frequently asked questions
When will we know if our baby is okay after HIE?
There's rarely a single day. Cerebral palsy, or a high risk of it, can usually be identified before six months' corrected age. A clearer overall picture often comes at the two-year assessment, and some effects on learning and behaviour only show at school age.
Why won't the neurologist give us a prognosis?
Because a baby's brain keeps developing and can adapt after injury, and similar scans can lead to very different outcomes. Australian guidelines tell doctors to avoid false certainty. Ask instead what is known now, what isn't, and when you'll know more.
Is my baby out of the woods at one year?
Many babies are doing well at one and stay that way. But some effects of HIE, such as on learning, coordination or behaviour, only show at school age, which is why follow-up continues to at least two years and it helps to tell your child's school about their birth.
What does "high risk of cerebral palsy" mean?
It is an interim diagnosis when tests point towards cerebral palsy but it is too early to be sure. It lets your baby start therapy designed for cerebral palsy straight away, rather than waiting for a final diagnosis.
Should we wait until we know how our child is affected before getting legal advice?
Not necessarily. A child's claim is often valued later, once their needs are clearer, but evidence fades and time limits apply. Getting advice early, often starting with the records, doesn't commit you to anything.
Questions about your baby's care?
When you're ready, and not before, we can talk through what happened and look at the records with you, confidentially. There's no cost to find out where you stand, and no pressure to do anything with the answer.
Free case review Contact- HIE after birth: a guide for parents (hub)
- "It was five days before I held her": the first week in NICU
- "Moderate, then mild after the MRI": what the grade means
- "My baby wasn't cooled"
- "The MRI says basal ganglia": reading the results
- "Still on the NG tube": feeding after HIE
- "Wait and see": the first two years (you are here)
- "Tucked thumbs, head lag, stiff legs"
- Early intervention and the NDIS
- "Why didn't they do a caesarean sooner?"
- "The notes don't match what I saw"
- "They said there's no case because he's fine"
- "How long do we have?"
- "I keep replaying the birth"
- Pregnancy after HIE
- "I'm a nurse and I'd never heard of HIE"
More on birth injuries: birth trauma and obstetric negligence · getting your birth records
References
- Royal Hospital for Women, South Eastern Sydney LHD. Hypoxic-Ischaemic Encephalopathy (HIE) in Infants ≥35 Weeks Gestation, CLIN070, revision 3, July 2024. seslhd.health.nsw.gov.au
- Novak I, Morgan C, Adde L, et al. Early, accurate diagnosis and early intervention in cerebral palsy: advances in diagnosis and treatment. JAMA Pediatrics 2017;171(9):897–907. PubMed Central
- Cerebral Palsy Alliance. Early Assessment and Diagnosis of Cerebral Palsy: A Guide for Parents and Caregivers. cerebralpalsy.org.au
- Cerebral Palsy Alliance. Early Diagnosis Clinic for Cerebral Palsy. cerebralpalsy.org.au
- Australian Cerebral Palsy Register. Australian CP Register Bulletin 2025: community summary (birth years 1995–2018). cpregister.com
- Lee-Kelland R, Jary S, Tonks J, Cowan FM, Thoresen M, Chakkarapani E. School-age outcomes of children without cerebral palsy cooled for neonatal hypoxic–ischaemic encephalopathy in 2008–2010. Archives of Disease in Childhood: Fetal and Neonatal Edition 2020;105(1):8–13. fn.bmj.com
- National Disability Insurance Agency. What the early childhood approach is. ndis.gov.au
Stories in this article are composites drawn from many families' experiences and have been changed so that no one can be identified. They do not describe any individual client.
Written by Dr Rosemary Listing, PhD (Law). Rosemary is a medical negligence lawyer and Of Counsel at Peter Evans & Associates. She has practised since 2013 and worked on many hundreds of claims, including for families after injuries at birth. Her doctoral research examined patterns of failure in medical negligence, and she is a Sessional Lecturer in Health Law at the University of Newcastle. She is responsible for all content published under her name.
Rosemary is not medically qualified. Clinical information in this article is drawn from, and checked against, the Australian guidelines and the research listed in the references. Legal information reflects the law as at the review date.
Last updated 28 October 2026. First published 28 October 2026. Next review April 2027.
Cite this article: Listing, R. (2026, October 28). "Wait and See": Living With Uncertainty in the First Two Years After HIE. Reframe Legal. https://reframelegal.com/hie-wait-and-see/
This article is general information only. It isn't medical or legal advice about your situation, and reading it doesn't create a lawyer and client relationship. If you are worried about your baby, speak to your baby's medical team. If you are in crisis, call 000 or Lifeline on 13 11 14. Legal services are provided by Peter Evans & Associates.
