Brett Einerson: Bill would prevent undue suffering of Utah’s parents and children

Law as it stands does not use language that makes sense to doctors.

(Rick Egan | The Salt Lake Tribune) Members of Abortion Free Utah and other groups listen to speakers at the Capitol as they celebrate the end of Roe v. Wade, on Saturday, July 2, 2022.

With the Utah Legislature looking to end the court injunction on the state’s anti-abortion trigger law, SB 174, with a change to judicial rules contained in HJR 2, it is imperative that we take action to limit the suffering of Utah families.

Passed in 2020, SB 174 bans almost all abortions after implantation. However there was an attempt to allow exemptions for devastating fetal abnormalities to prevent extreme suffering.

Unfortunately, the language that was passed by the Legislature fails to address the complexities of pregnancy and the uncertainty of fetal medicine.

“Uniformly fatal” and “uniformly lethal” are not terms I or my colleagues practicing high-risk pregnancy care across the state would use. Most of the fetal conditions we find and discuss with families do not neatly fit into these boxes constructed by SB 174.

This reality was especially true for a patient I provided care for recently. This patient came to me at 19 weeks pregnant. Up until this point there was no indication that something might be wrong with her pregnancy.

Like most families I see, this couple was excited to see their newest family member on the ultrasound screen.

While performing the ultrasound my heart sank as I noticed findings indicative of a severe skeletal disease known as campomelic dysplasia. I prepared to have a difficult discussion with my patient.

I explained that children with campomelic dysplasia are often born with very short, bowed limbs. Their airway is typically underdeveloped and unable to support normal breathing, a condition called laryngotracheomalacia. Most children with conditions like this one die essentially by suffocation very soon after birth.

She and the father were devastated. I sat with them and answered their questions as they weighed the consequences of impossible decisions, with which no parent should be faced. As I do with all patients, we discussed the variety of care paths available to them.

After careful consideration, this couple decided they could not live with the decision to bring their child into the world to experience such enormous suffering.

My patient elected to undergo the 72-hour wait period and state-mandated anti-abortion module and had an uncomplicated abortion.

Under SB 174, my patient would not have had this option in the state of Utah.

Making a certain diagnosis of fetal conditions before delivery is complex and nuanced. Ultrasound is often not able to tell parents the true fetal diagnosis with complete certainty. Tests can be done, but sometimes the diagnostic odyssey ends without sure answers.

Even when the diagnosis is known, we fetal specialists cannot always predict whether a condition is “uniformly lethal.” In campomelic dysplasia, up to 5% of newborns survive infancy with the help of extraordinary life-sustaining measures. Many of those that survive infancy die painfully in early childhood.

Is this condition, and many others like it, “uniformly lethal?”

Should the answer to that question even matter for parents trying to make a compassionate choice for their child based on the information given to them by doctors like me?

We must remember that these are the decisions of loving parents, weighing their own values while trying to do what they believe is best for their child in the face of insurmountable suffering.

Unless steps are taken to clarify the fetal exemptions to this law, families like the one I cared for will be forced down one care path. It is cruel to deny parents the ability to choose a compassionate care path based on their own individual assessment.

The current language will surely result in tragedy and unnecessary suffering for families across our state. Lawmakers now have an opportunity to prevent or limit some of this suffering.

HB 153, sponsored by state Rep. Raymond Ward, would, if passed, ensure compassionate care in situations like my patient experienced.

Unlike current law, HB 153 was written by doctors to ensure parents in consultation with their physicians can choose what is best for their families in the face of impossible circumstances.

Utah’s OB/GYNs are hopeful that the Legislature will see the wisdom in these clarifications and join Representative Ward in protecting our patients and their families.

I, along with my colleagues in OB/GYN, urge the Utah State Legislature to adopt HB153.

Brett Einerson

Brett Einerson, M.D., is a physician and maternal-fetal medicine specialist in Utah.