LARGO, Fla. -— Cynthia Romero Torres scoots around the room, chasing brightly colored balls. She grabs a black crayon, then a chunk of neon-orange Play-Doh.
Everyday stuff for an 18-month-old.
But for Cynthia, these simple tasks mean major progress.
She was born at just 25 weeks’ gestation, weighing one pound.
Her eyes were so underdeveloped at birth, she’s had seven surgeries.
Now an otherwise healthy toddler, Cynthia illustrates a double-edged trend: While survival rates of extremely pre-term babies are rising, so is the incidence of vision problems related to prematurity, including blindness.
Eye doctors and others who serve the needs of the visually impaired worry that they won’t be able to handle this new wave.
“We’re not equipped,” Pinellas County ophthalmologist Dr. Jeffrey Schwartz said.
The technology exists to help children like Cynthia, but costs are high, the number of specialists is limited and many mothers who have preterm babies don’t have health insurance, he says.
“The issue is access,” adds Dr. Jonathan Mines of Bay Area Retina Consultants.
“There are patients that get through the cracks because they are indigent and don’t have appropriate care.”
And Dan Mann, president and CEO of the nonprofit Lighthouse of Pinellas, worries whether groups like his — which rely on government money — will be able to provide training and therapy to the growing visually impaired population, particularly now as the state wrestles with a budget deficit.
“Across the board I’m concerned,” Mann said.
Advances in neonatal care have helped doctors save more tiny babies than ever before. A 2009 study published in the Journal of the American Medical Association showed markedly higher one-year survival rates for infants born at less than 27 weeks between 2004 and 2007 compared with similar babies born between 1990 and 1992. (Full term is considered to be about 40 weeks.)
But early preterm infants, those born before 27 or 28 weeks, are at greater risk of many medical problems, including hearing loss, cerebral palsy and vision impairment.
A Swedish study found a higher incidence of retinal damage, called retinopathy of prematurity, in babies born before 27 weeks.
These babies also are at greater risk of glaucoma and amblyopia, more commonly known as lazy eye.
Much of the eyes’ development takes place in the last 12 weeks of a 40-week gestation. So in cases of preterm babies, “the retina hasn’t had time to develop,” Schwartz said.
Retinopathy of prematurity is the abnormal development of blood vessels in the retina, which is the tissue that lines the back of the eye.
Retinopathy can occur when a preterm birth halts the normal growth of blood vessels to the edges of the retina.
The disorder is treated with laser therapy or cryotherapy to destroy the outside of the retina, which will slow or reverse the abnormal growth of blood vessels.
Essentially, the smaller a baby is at birth, the more likely the baby will develop vision problems.
Of the approximately 28,000 babies born in the United States each year that weigh 23/4 pounds or less, more than half have some degree of retinopathy.
Some cases are mild and require no treatment, but others require surgery, and about 400 to 600 infants each year become legally blind from the disorder.
What’s more, the number of children born preterm is increasing. Nearly 13 per cent of all U.S. births are pre-term, compared with 11 percent 15 years ago.
Babies arrive too soon and too small for many reasons. But Schwartz says proper prenatal care is key to helping more babies make it to full term and lessen the chances of visual impairment.
“If you’re born before you’re fully developed, you may not fully develop,” he said.
Doctors say the earlier the eye disorder is diagnosed, the better the child’s visual prognosis.
Marisol Torres, 30, said her daughter faced many medical challenges when she was born extremely pre-term at Bayfront Medical Center in St. Petersburg, Fla.
Cynthia was bleeding from her heart and lungs, and Torres said doctors told her the baby had little chance to survive.
But she did, and when Cynthia was one month old, doctors discovered she had retinopathy of prematurity in both eyes.
She has since had seven surgeries to treat the disorder. Though her vision is good now, it’s uncertain whether she’ll need eyeglasses or have substantial vision loss in the future.
“The doctor says there’s a big chance she will not be totally blind,” Torres, a Clearwater, Fla., resident who is from Mexico, said through a translator.
Cynthia and other visually impaired children get aid from agencies such as Lighthouse of Pinellas, which works with them in developing cognitive skills, motor skills and speech.
Lighthouse serves about 30 to 40 children a year, and Mann expects that number to grow as the visually impaired population increases.
Anna Kiefriter has been using Lighthouse services for much of her son Nicholas’ life.
Nicholas was born at Bayfront when Kiefriter, who experienced complications through her pregnancy, was only 24 weeks along.
Doctors soon learned Nicholas had retinopathy of prematurity.
Nicholas, 5, is a kindergartener at Our Lady of Lourdes Catholic School in Dunedin, where his mother is a music teacher.
Nicholas is legally blind in his right eye, and his left eye is only slightly better. He has limited peripheral vision, caused by the damage to the outer portions of his retina.
He has had surgery, and has worn glasses since he was 10 months old. Kiefriter says she has lost count of how many pairs he has gone through.
But, she says, he never takes them off. Even when he sleeps.
“He always wants to see,” Kiefriter said.