During her 12-week sonogram, Michelle Dress learned that the baby she was carrying had a lower urinary tract obstruction, known as a LUTO, that blocked urine from leaving his body.

She sought care at the Center for Fetal Therapy at Johns Hopkins Medicine, where director Ahmet Baschat performed an intrauterine procedure, inserting a shunt that allowed urine to flow outside the fetus. With continued care from Baschat and Jena Miller, assistant professor of gynecology and obstetrics, Georgie was born at 31 weeks.

“Being born early, in addition to the LUTO, he passed away,” says Dress, of Shrewsbury, Pennsylvania. “But he was born alive, and we are so grateful for that. It was such a hard time with so many hard things to think about.”

Michelle and her husband, Jim, had a lot of support through the emotional roller coaster and months of treatment, including from neonatal chaplain Kat Kowalski.

What they didn’t have was the opportunity to talk with others who had gone through similar experiences.

“The doctors were wonderful,” Dress says. “They answered tons of questions. But being in the parent role, we definitely wish we could have had a little bit of perspective from other parents.”

That was in 2017. Three years later, Baschat invited the Dresses and others who had received care at the Center for Fetal Therapy to form a new patient and family advisory council (PFAC). 

The Dresses, both teachers, immediately said yes. Now, they are trained and approved to provide one-on-one support to patients receiving fetal therapy at Johns Hopkins.

Johns Hopkins has 22 PFACs, which represent specific patient populations in every hospital as well as those receiving treatment from community physicians and home care. The two newest councils are for fetal therapy, formed in 2020; and for transgender and gender expansive care, in 2023 (see sidebar).

Small, Fast-Changing Fields

These new PFACs support patients in fields where finding people with similar experiences can be challenging. Along with giving feedback on how to improve the care Johns Hopkins provides, a top priority for many PFAC members is creating both one-on-one and group support structures.

As Baschat notes, the Center for Fetal Therapy, launched in 2014 at The Johns Hopkins Hospital, has cared for about 5,000 families, each with a highly personal experience. The patients have dozens of prenatal conditions, and the center introduces new procedures on a regular basis.

One of the more common procedures is for twin-to-twin transfusion syndrome, in which identical twins who share blood vessels do not receive the same amount of blood. Treatment involves closing the blood vessels with laser surgery so both twins can thrive.

In other cases, such as a prenatal repair for spinal bifida, fetal therapy does not cure the condition but provides opportunity for a better quality of life.

Learning How to Give Support

For support volunteers like the Dresses, big hearts and a willingness to help are just the beginning. They also need training, explains Sue Mead, parent adviser on the staff of Johns Hopkins Children's Center and co-chair of the Pediatric Family Advisory Council.

Mead helped start the first Johns Hopkins PFAC in 2008, two years after her daughter, Julia, was successfully treated at Johns Hopkins for a brain tumor. Mead was inspired, she says, by her experience leaning on a friend of a friend whose child was treated for the same kind of tumor.

“Sometimes, all you need, in order for you to know that you can do this, is knowing that somebody else did it before you,” says Mead.

 In 2015, she became a paid parent adviser to the Children’s Center. In that role, she developed a training program for former patients to provide support, and she shepherded it through regulatory and legal approvals.

Before the COVID-19 pandemic, she says, “We’d have peer support training on a Saturday morning and get breakfast and people would come in (to the Children’s Center). We’d go through the slides together, along with some role playing.” Now, Mead sends slides and videos to potential volunteers.

The materials teach them how to be good listeners and communicators, how to talk about their own experiences without giving medical advice, and when to recommend additional resources.

Those interested in providing support become hospital volunteers and need to complete background checks and Health Insurance Portability and Accountability Act (HIPAA) confidentiality classes, ensuring that the details of their conservations remain private.

As of May of this year, five people, including the Dresses, had been trained to provide support to patients receiving fetal therapy. When matching support volunteers with patients, Mead and the center’s clinicians take into account such factors as the procedure or illness the family is coping with, whether the family has other children and if English is their primary language.

The Dresses know that helping other parents will be time consuming and emotionally wrenching, yet they are eager to begin.

“We look for ways to keep our son alive in our hearts,” says Michelle Dress. “We've got three other children who are here and healthy and into all sorts of things, which is wonderful. This is a way to make sure we stay rooted and grounded.”