Cerebral palsy, mental retardation, chronic lung disease, blindness and hearing loss are among the lifelong challenges that often face extremely premature infants -- if they survive to leave the hospital.

Miracle Babies

Rumaisa Rahman made news in December when doctors said she would be going home soon. Just 8.6 ounces (260 grams) at birth, she set a new record for the tiniest baby in the world to survive.

Physicians said that both she and her twin sister Hiba, who weighed in at 1 pound, 4 ounces at birth, were doing "extremely well" and were expected to develop normally. But that is not the usual prognosis for the extremely premature.

22 Percent Severely Disabled

Death or severe cognitive and neuromotor impairment are common outcomes for very early babies, according to the study conducted at the University of Nottingham in England.

This British study is the largest to date of babies born at 22 to 25 weeks of gestation with followup to early school age. Among the findings is that 41 percent of the extremely premature group have severe or moderate mental impairment at six years of age, compared to only 2 percent of a comparison group of classmates born full term.

The results showed that 20 percent of the children had no problems, while 22 percent had severe disability, such as severe cerebral palsy (children not walking), very low cognitive scores, blindness or profound deafness.

The proportion of children with cerebral palsy with severe or moderate motor disability was 12 percent, and 24 percent had moderate disability, such as cerebral palsy (but walking), IQ/cognitive scores in the special-needs range, or lesser degrees of visual or hearing impairment.

Half Do 'Reasonably Well'

The assessment for the children in the study was not entirely bleak.

Just over one-third (34 percent) had problems considered mild, such as wearing glasses, a squint or low/normal cognitive scores.

Neil Marlow, Professor of Neonatal Medicine in the University’s School of Human Development and joint author of the paper, said: "The strength of this study is its uniqueness and its completeness enabling us to marry up all the data from birth to childhood.

"These results show that the majority of children do not have a serious physical disability, i.e., do not have cerebral palsy, blindness or deafness," Dr. Marlow pointed out, "and despite the high incidence of learning difficulties, half are doing reasonably well and keeping up with their classmates."

Number of Preterm Births Rising

"Prematurity is a common, serious problem in America and unfortunately, the number of preterm births is rising each year," said Scott D. Berns, M.D., M.P.H., FAAP, vice president for chapter programs of the March of Dimes.

"Too many babies are born extremely premature in this country, and the result is that many of them die in the hospital or suffer lifelong consequences," Dr. Berns noted.

"More research on the underlying causes of preterm birth is needed if we are to reverse this trend," Dr. Berns said. "The March of Dimes wants to prevent prematurity from occurring in the first place -- we want every birth to be a healthy one."

Support for Families

In 2003, the March of Dimes launched a five-year, $75 million Prematurity Campaign that includes more funding for medical research, services and education for women and their providers, and help and hope for families in crisis. It includes March of Dimes NICU Family SupportSM, a national project that provides comfort and information to families with a newborn in the neonatal intensive care unit.

Families who have experienced or are experiencing a preterm birth are invited to visit marchofdimes.com/share, an online community for families to share their stories.