Miriam Zoll advocates for better patient education for those considering IVF with multiple embryo transfer.

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The Ontario government’s recent decision to publicly fund one round of in vitro fertilization (IVF) has spurred strong public discourse on both sides of the debate concerning the state’s role in such matters.  Regardless of who pays for IVF, there is a need for improved patient education.

In my new memoir, Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies, I write candidly from a former patient/consumer perspective about the unregulated infertility industry in the United States. In particular, I focus on the successful marketing of infertility procedures that have consistently exhibited high failure rates across all age groups, particularly among older women. I also question significant gaps in evidenced-based research to determine short and long-term risks to infant and women’s health, including mental health.

Will Barnet, Smithsonian American Art Museum

Since 1978, when the first ‘test tube baby’ was born in Britain, infertility specialists have been very adept at marketing new technologies––many still experimental––in a positive light. Most clinic websites in the U.S. are emblazoned with photos of smiling couples holding fat, cuddly babies. Distraught women and men yearning for parenthood and browsing those sites are naturally drawn toward these hopeful images––I know I was ––yet the vast majority of infertility patients learn through first-hand experience that this portrayal is often misleading.

Only a small minority of couples who sign up for treatments like IVF will birth babies. The European Society for Human Reproduction and Embryology reports that 80 percent of assisted reproductive technologies (ART) cycles fail annually around the world; in the U.S., 2012 data from the Centers for Disease Control and Prevention (CDC) show an overall failure rate of 71 percent. Even women younger than 35 who are considered strong candidates for success experience a 60 percent failure rate. For older women the failure rates are much higher. There are no public data about the failure or success rates––or long-term health risks––linked to straight hormone shots or intrauterine insemination (IUI).

When infertility treatments do succeed, the birth of a healthy child is clearly something to celebrate. Yet, amidst the joy, it is important to understand that almost half of all ART births in the United States in 2012––anywhere from 28,000 to 30,000––consisted of twin and triplet births compared with only three percent in the general population. CDC data show that roughly 37 percent of all ART infants are born prematurely, a significantly higher rate than the 12 percent of premature babies born naturally.

Multiple and premature births, whether they occur in nature or as a result of ART, carry considerably higher health risks for babies and mothers. Many organ systems, including the brain, lungs, and liver need the final weeks of pregnancy to develop fully.Delivery before 37 weeks can lead to visual and hearing impairments, intellectual and learning disabilities, and lifelong behavioral and emotional problems. Babies born preterm or with low birth weight are at greater risk of death in the first few days of life: in 2009, preterm-related causes of death together accounted for 35 percent of all infant deaths nationally––more than any other single cause.

As an example, at one California Neonatal Intensive Care Unit (NICU) from 2012-2013, 92 ART infants were born. Ten very prematurely born infants––including two sets of triplets and one set of twins––died on the first day after birth, and four died later.  Of the 78 infants who survived, 61 babies were admitted to NICU. Only nine were single deliveries––the rest were multiple births.  The average length of stay in the NICU was 38 days, with a range of 3 to 138. Daily charges spanned from three thousand dollars to upwards of ten thousand dollars per day, and in one case, hospital fees were more than $1 million dollars.

These scenarios are sobering. They are meant to illustrate the reality of close to half the couples that survived the gauntlet of infertility treatments in 2012 and then went on to face the anxiety, and in some cases, tragic outcomes of premature and multiple births­­. Too often these families are unprepared for these grave emotional and financial consequences, or for the responsibility of caring for children who may have long-term disabilities resulting from extreme prematurity.

Earlier this month I was pleased to learn that the National Perinatal Association, representing a wide spectrum of maternal-infant health specialists, advocates, and parents of babies cared for in NICUs, released its first Position Statement on the Ethical Use of Assisted Reproductive Technologies (ART). One of its key recommendations addresses the need for much broader and transparent patient education procedures, particularly as they relate to the higher rates of risky twin and triplet births resulting from multiple embryo transfers or the use of ovarian induction and stimulation with IUI.

From a patient education standpoint, the National Perinatal Association should be applauded for proposing that, prior to initiating treatments, patients receive counsel from a multidisciplinary medical team. They suggest the team be comprised of health professionals from the fields of maternal fetal medicine, neonatology, genetics and psychology. I would add to this list former patients who have opted for multiple embryo transfer and experienced a range of infant health outcomes––both positive and negative.

No doubt exposure to other families and to medical experts well-versed in the lifelong health and developmental spectrum of potential offspring––rather than those focused primarily on conception––could significantly boost patient understanding of the real risks they and their families could face.

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Miriam Zoll is a long-time health and human rights advocate and the author of the new memoir, Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies (Interlink-2013).