Two families in Cornwall say their children were treated with a drug that may have caused their brain damage.
By 2000 a quarter of very low birth weight babies were being given the drug
Both Tylan Lee, 6, and Nicholas Smith, 14, were born premature and given a steroid when they were just days old.
Dexamethasone was widely used in the 1990's to treat premature babies with chronic lung disease and was latterly given to prevent it developing.
The Department of Health says a review in 2001 concluded the benefits were "not convincing."
The anti-inflammatory had been safely given to adults for decades, which is why doctors thought it fine for babies.
By 2000 a quarter of all very low birth weight babies (under 1.5kg) were being given it.
Dr Eric Shinwell, of Stanford University in California, first reported a link between dexamethasone use with premature babies and cerebral palsy in that year.
In conclusion he said the use of the drug with premature babies "is associated with a significantly increased incidence of cerebral palsy and developmental delay".
But the link is still subject to debate within the medical profession worldwide.
Gina Lee cares for her son Tylan who has profound disabilities. He was given dexamethasone when he was just a few days old.
"There are a lot of people with children with cerebral palsy who are not aware of why they got it," she said.
Julie Smith's son Nicholas was given it when he was just 11 days old. He also has cerebral palsy.
"I've been looking at the circumstances of Nicholas's birth since about 1995 and it wasn't until a couple of years ago that I was even aware of the drug dexamethasone," she said.
The possibility of a link with cerebral palsy means it is generally only used now in exceptional cases.
Help to breathe
In a statement, the Department of Health said the Medicines and Healthcare Products Regulatory Agency and the Committee on Safety of Medicines reviewed its safety in premature babies in 2001.
A warning about a possible link was subsequently put in product information and the DoH passed on its concerns in an article, published in a paediatric journal.
The premature baby charity Bliss told BBC News Online that it also "recognised" the potential link shown in research, and hoped doctors would take note.
The drug was used because the bodies of many premature babies do not make a chemical that stops the lungs from collapsing when they exhale.
Respirators help them to breathe, but can stretch the lungs and can lead to chronic lung disease.