Dr. Robin Pierucci, who recently retired after over 25 years of practice as a neonatologist and bioethicist, quickly stepped into a new initiative: supporting parents and families who experience a prenatal diagnosis, along with the compassionate healthcare professionals who seek to serve them well.

Key Takeaways:

• Retired neonatologist Dr. Robin Pierucci stepped almost immediately into supporting families who receive a prenatal diagnosis with the organization Navigating Fetal Concerns.

• The organization offers free support to families and even healthcare professionals.

• Parents receiving such a diagnosis often experience three traumas at once: the diagnosis itself, the counseling toward abortion, and the pressure to make a decision quickly.

• Navigating Fetal Concerns shifts the conversation away from a fear-based sense of desperation and into an approach that is realistic, hope-forward, and focused on both the mother and her baby.

The Details:

Dr. Pierucci’s medical and bioethics background uniquely equipped her to spearhead Navigating Fetal Concerns, an organization offering “compassionate, trauma informed, medically-accurate support for families facing a fetal diagnosis.”

That support begins with filling out a basic contact form on the website and continues through the first year after delivery, completely free.  

Pierucci spoke with Live Action News about the heart behind Navigating Fetal Concerns, as well as what families, friends, or concerned healthcare professionals can expect when they reach out through the organization’s website. 

The heart: 'We don't abandon people'

During her time as medical director of the Michigan NICU, Pierucci often introduced herself to patient families as “excelling in worrying," telling them, "Being a doctor means it's my job to worry about everything, and I promise to call you if there’s something happening, including in the middle of the night.”

That same commitment to accompaniment, a hallmark of trauma-informed care, is at the heart of Navigating Fetal Concerns. She summed up simply, “We don’t abandon people” in their time of greatest need.  

Three traumas at once

Long before Navigating Fetal Concerns formally came to be, Dr. Pierucci was consulted by a maternal fetal medicine specialist to speak to an expectant mother who had just received confirmation of a Down syndrome diagnosis. When she entered the room, Pierucci was confronted by the distraught mother crying out, “Why does every doctor want to kill my baby?” 

When families receive a prenatal diagnosis, Pierucci explained, they can suffer three separate traumas at once:

• First, there’s the sudden, unexpected diagnosis of a life-altering condition like Down syndrome or a life-limiting one like anencephaly. Many mothers and families receive surprising news after genetic testing, not realizing that it may have been a screening test – not a diagnostic one. (This means that it predicts the likelihood of having a certain condition, not a guarantee.) 

• Second, because ACOG and the Society for Maternal Fetal Medicine policies state that abortion is healthcare, in the same conversation that a family receives a scary diagnosis, they’re routinely counseled about the option to “terminate” the pregnancy — a particularly traumatic “treatment” option when the baby was clearly awaited and anticipated with joy.

• Third, mothers and families are often pressured or rushed to decide, and, as Pierucci observed, it’s “impossible and unfair” to expect parents to make good decisions in a moment of crisis. 

Shifting out of fear mode

Dr. Pierucci responds to families who reach out to Navigating Fetal Concerns by shifting the conversation altogether away from a fear-based, boxed-in sense of desperation and into an approach that is realistic, hope-forward, and focused on “the most important, powerful dyad in the world,” both the mother and her baby.

The questions become:

• “What does this diagnosis mean and how little or how much do we know about how the baby will be affected?"

• "How do we help parents move forward?”

• “How do we give parents space to fall in love with their child and then make medical decisions that are consistent with their values?” 

What Happens:

Practically speaking, when a family or concerned friend reaches out through the Navigating Fetal Concerns website, that person is contacted within 48 hours by Dr. Pierucci herself. She remains in weekly or every-other-weekly contact with them, available through a HIPAA-compliant texting or video format. 

(Note: Medical professionals who have just delivered a prenatal diagnosis are also always welcome to reach out to Navigating Fetal Concerns for medical or ethical consultation.)

Helping parents to become advocates and handle uncertainty

Dr. Pierucci gets to know the details of the mother’s medical background as well as the baby’s diagnosis. Her biggest priorities are to help the mother and her partner to become excellent advocates for their baby and to help them learn to move forward amidst uncertainty.

She teaches them the medical jargon they need to know to understand what’s going on, potential treatment options, and when to seek out a second opinion, especially if they’re told that “nothing can be done” for their baby’s particular condition.

Pierucci observed, “It is possible that medically, we will have limited ability to fix underlying pathology, but that never absolves us from our obligation to care.” 

Over and over again, she helps slow down the sense that things are happening at warp speed and asks a basic but key question: “'Since we haven’t even met the baby [outside the womb] yet, can we give them a chance?' Let’s avoid ‘voting someone off the island’ before we’ve even met them.” 

Creating a birth plan

She also assists families in creating a birth plan — which feels humorous to her, because years ago, she felt annoyed by overly detailed or unrealistic birth plans.

In the case of families who receive a prenatal diagnosis, thoughtful, detailed birth plans help get all the healthcare staff on the same page for labor and delivery. The birth plan thanks each professional for caring for the family and communicates two things clearly: “we’re not in denial [about the baby’s medical condition] and we’re also already in love.” 

Education about post-delivery issues

Dr. Pierucci also educates parents on what their baby responding well (or not responding well) to resuscitation measures looks like, so that they can be prepared for what will happen after delivery, as well as what will happen if their baby does not survive the labor and delivery process.

Before the pressure of the delivery room, she covers what ordinary vs extraordinary medical care (or proportionate vs disproportionate) looks like, meaning “what can reasonably be expected to succeed” vs what is unlikely to succeed.

This is meant to help parents make the best decisions in light of both medical technology and the needs of their particular family.  

Moving Forward: 

Already, Navigating Fetal Concerns has walked with (and is currently walking with) many families.

In the future, Pierucci hopes to bring additional, like-minded healthcare clinicians on board who share the same determination and dedication to “trauma-informed care, medical excellence and research-backed information, lack of judgment, transparency, and honesty.” 

In the meantime, Pierucci views the core of her day-to-day efforts as very simple: How can we help each individual mother integrate her particular child, with all the medical complexity of their needs, into her family’s story?