Sunday, October 11, 2009

The risks that IVF bring - more babies with disabilities?

From the intro to a longer story The New York Times:

Scary. Like aliens. That is how Kerry Mastera remembers her twins, Max and Wes (pictured), in the traumatic days after they were born nine weeks early. Machines forced air into the infants’ lungs, pushing their tiny chests up and down in artificial heaves. Tubes delivered nourishment. They were so small her husband’s wedding band fit around an entire baby foot.

Having a family had been an elusive goal for Jeff and Kerry Mastera, a blur of more than two years, dozens of doctor visits and four tries with a procedure called intrauterine insemination, all failures. In one year, the Masteras spent 23 percent of their income on fertility treatments.

The couple had nearly given up, but last year they decided to try once more, this time through in-vitro fertilization. Pregnancy quickly followed, as did the Mastera boys, who arrived at the Swedish Medical Center in Denver on Feb. 16 at 3 pounds, 1 ounce apiece. Kept alive in a neonatal intensive care unit, Max remained in the hospital 43 days; Wes came home in 51.

By the time it was over, medical bills for the boys exceeded $1.2 million.

Eight months later, the extraordinary effort seems worth it to the Masteras, who live in Aurora, Colo. The babies are thriving and developing their own personalities — Wes, the noisy and demanding; Max, the quiet and serious. Like many other twins conceived through in-vitro fertilization, the Mastera boys will go down in the record books as a success — both for the fertility clinic that helped create them and the neonatologists who nursed them to health.

But an exploration of the fertility industry reveals that the success comes with a price. While IVF creates thousands of new families a year, an increasing number of the newborns are twins, and they carry special risks often overlooked in the desire to produce babies.

While most twins go home without serious complications, government statistics show that 60 percent of them are born prematurely. That increases their chances of death in the first few days of life, as well as other problems including mental retardation, eye and ear impairments and learning disabilities. And women carrying twins are at greater risk of pregnancy complications.

In fact, leaders of the fertility industry and government health officials say that twins are a risk that should be avoided in fertility treatments. But they also acknowledge that they have had difficulty curtailing the trend.

Many fertility doctors routinely ignore their industry’s own guidelines, which encourage the use of single embryos during the in-vitro fertilization procedure, according to interviews and industry data. Some doctors say that powerful financial incentives hold sway in a competitive marketplace. Placing extra embryos in a woman’s womb increases the chances that one will take. The resulting babies and word of mouth can be the best way of luring new business.

Doctors are also often under pressure from patients eager for children, who have incentives to gamble as well. Frequently, they have come to IVF as a last resort after years of other treatments, are paying out of pocket, and are anxious to be successful on the first try. And many do not fully understand the risks.

Dr. William E. Gibbons, incoming president of the American Society for Reproductive Medicine, said his organization was concerned about the risks of twin pregnancies and would issue new guidelines at a meeting next week to further discourage multiple births. “People should be made aware of the concerns that we think twins are not a good outcome,” Dr. Gibbons said.

The industry creates preterm infants with in-vitro and other fertility treatments even as government and nonprofit groups work to fight the nation’s 12.7 percent rate of prematurity, regarded as a major national health care problem.

While IVF multiples are typically the children of affluent women, much of the effort at reducing premature birth has been focused on prevention and prenatal care for low-income women. A study released last week by the March of Dimes cited fertility treatments as one of the main reasons for a 36 percent increase in prematurity in the last 25 years.

The government estimates that caring for premature infants costs $26 billion a year, including $1 billion for IVF babies, expenses that eventually get passed through the system and on to businesses and consumers.

The unusual birth of octuplets in California in January notwithstanding, the American Society for Reproductive Medicine and its affiliate, the Society for Assisted Reproductive Technology, have succeeded in reducing the number of larger multiple births from in-vitro fertilization over the last several years.

The two medical organizations and the federal Centers for Disease Control and Prevention have been promoting the use of single embryos in many cases to reduce the number of twins. But that has not translated into major action at the 483 fertility clinics across the country. The latest figures from the industry show that women under 35, the group most likely to get pregnant from the treatments, choose to use single embryos in only 4.5 percent of in-vitro rounds.

“You can’t convince a couple that having twins is a bad thing,” said Dr. Maurizio Macaluso, who runs the C.D.C.’s women’s health and fertility branch. “That’s a major communication problem.”

In 2006, a record 137,085 twins were born in the United States, double the number in 1980. Of that total, 23,284 were the result of IVF, according to government statistics. The number does not include twins born as a result of other fertility treatments.

Most fertility doctors acknowledge the potential problems with twins, whether conceived naturally or through fertility treatments. But many say that the good done by their industry — creating new families — outweighs the bad, and that twins are not such a risky bet because most are healthy.

“At the end of the day, when you dissect the statistics out, our patients are interested in establishing a family and a pregnancy,” said Dr. Michael Swanson, a Colorado fertility doctor who treated Ms. Mastera.

It is a tricky cost-benefit analysis, however, and one that potentially involves the worst kind of collateral damage, the type that figures in the nightmares of expectant parents.

Erin and Scott Hare of Houston lost their twin daughter, conceived through in-vitro fertilization. Her surviving brother, Carter, who was born at just over 24 weeks, is doing well but needs therapy for lingering problems.

George and Narine Nazaretyan of Van Nuys, Calif., have twin daughters conceived through IVF. One of the girls, Natlie, has a severe case of cerebral palsy, which occurs four to six times as frequently in twins as in single babies.

Cutting down preterm births from IVF would be an easy way to make a small dent in reducing the nation’s prematurity problem. Dr. Macaluso calls them “low-hanging fruit” — a partial solution that is within reach.

But there is concern among public health officials that the problem may instead grow as fertility treatments become available to more people.

“In the past few years, we have felt increasingly uncomfortable because we feel like we are sitting on the tip of the iceberg,” Dr. Macaluso said.