Developmental delay after a birth injury

How does this happen?

Development happens in areas that are related but separate: gross motor, fine motor, speech and language, cognitive, and social and emotional. A child can be delayed in one area, in several, or in all of them.

"Global developmental delay" means significant delay in two or more areas.

Where a birth injury is involved, the delay follows the injury. Injury to the movement pathways produces motor delay. Widespread injury produces global delay. Injury to hearing or vision produces delay that looks like a language or cognitive problem but is actually an access problem, which is why hearing and vision should be checked in every child with unexplained delay. ^{6 7}

Delay is not always caused by injury. Genetic conditions, metabolic conditions, chronic illness and lack of opportunity all cause it, and in a share of children no cause is ever found.

What causes it?

Two different questions get mixed together here. The first is what leads to this injury in the body. The second is whether anyone could have prevented it. They are not the same question, and the answer to the first does not settle the second.

Happens even with perfect care

• Prematurity, which is the most common single reason for developmental follow-up. ⁴
• Genetic and chromosomal conditions.
• Metabolic conditions.
• Perinatal stroke, bleeding and brain malformations. ⁸
• Hearing or vision impairment, which delays development by limiting access rather than by damaging capacity. ⁹
• Serious illness in infancy, including long hospital stays.
• No identifiable cause, which is common.

Associated with gaps in care

These are situations where published standards say what the care team should watch for and do. A gap here does not prove anyone caused your child's injury. It points to where the medical records will have an answer.

• A parent's concern dismissed. "Wait and see" is the most common way months are lost, and current guidance is that a missed milestone is a reason to act. ³
• A child not referred to early intervention when a delay was suspected, when referral is free, quick and does not need a diagnosis. ²
• Hearing and vision not checked in a child with unexplained delay. ^{9 7}
• Corrected age not used, or used past the point where it applies, so a delay was either invented or missed. ⁴
• A birth injury not recognized, which takes you to the relevant condition page.
• The 45-day timeline not met after a referral. ²

Whether any of this amounts to a departure from the standard of care takes a physician expert reading the whole record.

What are the signs, by age?

Signs change as a child grows. A newborn cannot show you a walking problem. Some children look fine at first and show differences months later.

At birth and the first hours

Delay cannot be identified at birth. What exists are risk factors: prematurity, a difficult birth, seizures, abnormal imaging, or a diagnosed condition.

The first week

• Feeding difficulty and poor suck.
• Abnormal tone.
• Seizures. ¹⁰

Around 3 months

• Not holding the head up when on the tummy.
• Not looking at faces or following an object.
• Not smiling socially.
• Very stiff or very floppy. ³

Around 6 months

• Not rolling over.
• Not reaching for things.
• Not laughing or making squealing sounds.
• Not bringing things to the mouth. ³

Around 12 months

• Not sitting without support.
• Not babbling with consonants.
• Not responding to their name.
• No pointing or waving.
• Not pulling to stand. ³

Toddler years

• Not walking by 18 months.
• Fewer than about 50 words by 2 years, or no two-word phrases.
• Loss of a skill they had. This is always a reason for prompt assessment. ³
• Not following simple instructions.

School age

• Difficulty with reading, writing or number work.
• Difficulty with attention or organization.
• Social difficulties.
• Delay that was mild in the preschool years often becomes clearer once academic demands rise.

How is it diagnosed?

Step one: refer, then investigate

These happen in parallel, not in sequence. A child does not need a diagnosis to start therapy, and waiting for one costs time during the period when the brain is most able to change. ⁵

Refer to early intervention if your child is under 3, or to your school district if they are 3 or older. You can do this yourself. ^{2 11} The early intervention finder gives you your state's contact.

Step two: find out why

• Hearing and vision testing. These come first because they are common, treatable and easy to miss. ^{9 7}
• Developmental assessment by a developmental pediatrician or a multidisciplinary team.
• MRI where there is a motor delay, an abnormal examination, or a history of birth injury. ¹²
• Genetic testing, including chromosomal microarray, which is standard practice for unexplained global delay.
• Metabolic testing where indicated.
• EEG if seizures are suspected, especially if a skill has been lost. ¹³

Corrected age

For a baby born early, count from the due date for the first two years. A baby born at 28 weeks who is 9 months old is 6 months corrected, and should be judged against 6-month milestones. ⁴ Getting this wrong in either direction causes real harm: unnecessary alarm, or a missed delay.

What is the treatment?

Treatment is therapy, plus treatment of any underlying condition that is treatable.

• physical therapy for gross motor skills.
• occupational therapy for fine motor, feeding and daily living.
• speech-language pathology for communication and for eating and drinking safely.
• Developmental instruction, which is play-based teaching aimed at specific skills.
• AAC where speech is very delayed. Introducing a communication system does not slow speech development, and the fear that it will is one of the most persistent and unhelpful myths families encounter.
• Vision and hearing support where those are involved.

Under Part C, services are delivered in the child's natural environment wherever possible, which usually means at home or at daycare rather than at a clinic. ² That is a right, not a favor, and it is worth knowing when you are offered a clinic slot 40 minutes away.

Goal-directed practice, aimed at a specific goal the family chose, has better evidence than general handling. ¹⁴

What is the long-term outlook?

Outcome depends entirely on the cause, and delay covers an enormous range.

Some children catch up completely, particularly where the delay was related to prematurity, illness or a treatable sensory problem.

Some children continue to develop at their own pace with lasting differences.

Some children have a specific condition that shapes the picture.

Two things are worth saying plainly. First, "developmental delay" at 18 months is not a prediction of adult life. Second, early therapy makes a measurable difference, and it is one of the few things a family can start this week without waiting for anyone. ⁵

What does daily life look like?

Therapy appointments, home practice, and a lot of tracking.

The practical advice most families give is to pick one or two goals at a time. A therapy plan with twelve goals produces guilt and very little practice. A plan with two produces progress.

At age 3, services move from early intervention to the school district and the paperwork changes from an IFSP to an IEP. Start that transition process about six months early. ¹¹

Track what you see. The milestone tracker on this site runs entirely in your browser and prints out for appointments.

What does care cost over a lifetime?

Early intervention evaluation is free, and services under Part C are provided at no cost or on a sliding scale depending on the state and the service. ² Special education services from age 3 are free. ¹¹

Where developmental delay is part of an intellectual disability, CDC estimated lifetime costs at about $1,014,000 per person in 2003 dollars for people born in 2000. ¹⁵ That is a population average across a very wide range and it should not be read as a prediction for an individual child.

See the cost of care estimator and paying for care.

What can you do this week?

1. Refer to early intervention today if your child is under 3, or to the school district if 3 or older. Use the early intervention finder.
2. Book hearing and vision testing.
3. Write down what you are seeing, with dates and examples. The milestone tracker does this and prints.
4. Work out your child's corrected age if they were born early, and use it.
5. Ask your pediatrician what workup they recommend and why.
6. If your child has lost a skill they had, say so clearly. That specific phrase changes the urgency.

What should you ask each specialist?

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the pediatrician

• Which areas of development are delayed, and by how much?
• What is the workup you recommend, and what would each test change?
• Have hearing and vision been formally tested?
• Have you referred us to early intervention, or should I refer myself?

For the developmental pediatrician

• Is this delay in one area or global?
• What is the likely cause, and what would confirm it?
• Should we do genetic testing?
• What would you expect over the next year?

For the early intervention team

• What are the two goals we are working on right now?
• Can services happen at home or at daycare?
• What should we practice between visits?
• How do we prepare for the move to the school district at age 3?

You can also build a printable list with the question generator.