Dubbed “Snowbaby,” Emma Gibson is now more than a month old

Her birth made headlines globally recently as her 25-year-old mother gave birth to her though she was conceived in 1992. Frozen as an embryo that had been donated to a faith-based clinic in Tennessee, this case was the longest an embryo had been frozen resulting in a successful birth.

Emma’s face on video belied any signs of having been frozen for 24 years. Her birth is one of other major reproductive advances in the last year, including the transplanted uterus, and editing gene mutations in human embryos.

As a neonatologist, I question how much any of these parents were aware of what to expect. When medical professionals, in the case of the Gibson baby, confidently assert the safety of the procedure and generally good health outcomes, it prompts my doubts. The safety of transferring a frozen embryo, compared to a fresh embryo, appears to be no different in immediate perinatal outcomes such as preterm delivery, birth weight or pregnancy loss.

More worrisome is the utter lack of evidence on the impact of freezing time on safety. We might never know the risk of freezing an embryo for 24 years. Tina Gibson said she wasn’t told by her doctors until she was pregnant how long the embryo had been frozen. The ethical question is how much do professionals say—particularly when there is much we do not know.

Assisted reproductive technology (ART), such as this case, offer increased risks of pregnancy-related complications and birth defects, preterm delivery, low birth weight and growth restriction. Very few studies exist on the long-term effects on the child’s health in these cases. Yes, there are few regulations on ART in this country, in contrast to other developed nations, but uncertainties remain.

Working at a women’s hospital with over 12,000 deliveries a year, I often witness cases of babies conceived from ART. Twins and triplets are largely assumed to be results of in vitro fertilization (IVF). Deliveries by first-time-mothers in their 40s, even 50s, are not unusual. And many of these babies are admitted to the neonatal intensive care unit for prematurity and low birth weight.

Prior to delivery, neonatologists speak to parents in imminent danger of delivering prematurely. We tell them what will happen at delivery, who will be in the room and that they may not hear the baby cry right away. We tell them about the many problems of prematurity. By the time we get to percentages of survival, most parents have zoned out.

It is a common complaint from parents, weeks later with their baby in the neonatal intensive care unit (NICU), that they don’t remember these conversations. Even though documentation proves that the conversations did indeed take place, they cannot recall the warnings. Perhaps they truly don’t remember. Perhaps it’s a failure on our part as neonatalogists. While we do our best to assuage their fears, our words can be untimely, unkind and ineffective.

A mother of a five-year-old who was born prematurely, told me recently that the consult with the neonatologist was the worst part of her NICU experience. She says she remembers a trainee coldly rattling off problem after problem of things that could happen, “straight out of a textbook.”

It is true that no expert can predict exactly what’s going to happen in any pregnancy. None of the problems or complications may happen. And yes, things can go terribly wrong in naturally conceived births too.

Long term, limited available data show the positives—that ART children have normal social, emotional, cognitive and motor functions and do not seem to be at increased risk for childhood cancers, compared to spontaneously conceived children.

All of this, parents deserve to know. For many families, this child is their miracle baby, their last chance at IVF. It’s irresponsible to withhold disclosing risks, both known and unknown, from the beginning, and certainly before embryo transfer.

Many high-risk obstetricians contribute to the parents’ counseling. Their relationships with families are special, built on trust over months and even years. All parents undergoing ART need thorough counseling—not to scare them or to change their minds, but to explain possibilities as fully as possible.

Reproductive medicine can accomplish feats that were unimaginable just a few years ago. But as physicians privileged to participate in a family’s special moment of beginning, we can better inform and educate, as well as admit what we don’t know.

They have the right to know it all.