Understanding prognosis language

What the words usually mean

"We will have to wait and see." Usually true. It often also means the doctor does not want to say something they cannot support. Ask what they are waiting to see, and when.

"Guarded." Serious, and uncertain.

"Time will tell." Same as above. Ask what would change their assessment.

"Every child is different." True, and often a way of avoiding a number. Ask instead for the range: what does the best case look like, what does the worst, and where does my child sit today.

"He may never walk." This is a probability, not a verdict. Ask what it is based on. If it is based on an MRI and a motor assessment, that is meaningful. If it is based on a difficult birth, it is much weaker.

"She is doing well." Ask, doing well compared to what. Compared to yesterday, or compared to other children her age.

"Significant brain injury." Ask which parts of the brain, and what those parts do.

Better questions to ask

Replace prediction questions with observation questions. You get more, and you get answers a doctor can actually stand behind.

Instead of "will my child walk," ask:

• What would you expect to see by 6 months if things are going well?
• What would concern you?
• What are you watching for at each visit?

Instead of "how bad is it," ask:

• Which parts of the brain are affected, and what do those parts do?
• What did the MRI show, and when was it done?
• Which parts of this are you confident about, and which are uncertain?

Instead of "what does the future look like," ask:

• What can we do now that we will be glad we did in five years?
• What would change your assessment?
• When would you reassess?

One more, and it works everywhere:

• What would you want to know if this were your child?

What statistics can and cannot do

A statistic describes a group. It cannot tell you what will happen to one child.

"Most children with this do X" is genuinely useful for planning, and useless for prediction. Your child is one child, not a distribution.

What predicts better

Imaging. In newborn brain injury, MRI findings predict outcome better than the birth history does. ²

How your child develops over the first year or two. The trajectory tells you more than any single assessment.

Functional level. For cerebral palsy, the GMFCS level predicts everyday function better than the diagnosis, and it is generally stable from about age 2. ³

What predicts badly

The Apgar score alone. Guidance says plainly it should not be used on its own to predict outcome. ⁶

The birth story alone.

A single assessment on a single day, particularly of a child who was tired, hungry, or unwell.

The mistake that matters most

Movement ability does not predict thinking ability.

A child who cannot walk or speak may have typical intelligence. Children with severe motor impairment are the group most often underestimated, because the muscles used for speech are affected by the same injury that affects the body. ¹

This has consequences. A child assumed to have limited understanding is spoken to differently, taught differently, and given fewer chances to show what they know.

Assume competence. Get communication assessed properly and early. Then let your child show you.

If you take one thing from this page, take that.

Holding hope and uncertainty at the same time

You will meet two unhelpful versions of this.

The bleak version. Everything framed as loss, delivered to a parent who has just had a baby, sometimes on day one.

The empty version. "Every child is different, just love them," which tells you nothing and leaves you unprepared.

Neither is what you need. What helps is specific information with clear limits. Here is what we know, here is what we do not, here is what we are watching for.

You are allowed to hope and to plan for difficulty at the same time. Most families end up doing both. Applying for the waiver does not mean giving up. Celebrating progress does not mean denial.

One practical thing

Write down what you are told, with the date and who said it. Prognosis conversations happen when you are least able to absorb them, and predictions made at one week look very different at one year. Keeping the record lets you see how much things changed, which is often more than anyone expected in either direction.