Steven Leuthner, M.D. – Medical Director, Fetal Concerns Program, Children’s Hospital of Wisconsin/Medical College of Wisconsin

This past summer, Korine and Richard Schallack’s unborn baby girl was diagnosed with Trisomy 18 condition, a genetic disorder that is usually fatal.

About half of the infants diagnosed with the disorder die within the first week after birth.The Schallacks were understandably devastated by the diagnosis. Frightened and confused, they entered the Fetal Concerns Program, a cooperative effort between Children’s Hospital of Wisconsin and the Froedtert & Medical College Birth Center.

Dr. Steve Leuthner is medical director and creator of the program. He helps families through the decision-making process when a pregnancy is complicated by fetal health concerns.

Leuthner met with the Schallacks, discussed a course of action and set up a care plan reflecting their wishes. “Compassionate, comforting, encouraging and patient” are words that Korine Schallack uses to describe Leuthner, who was at her side on June 10, when she delivered a baby girl.

“I have this videotape of Dr. Leuthner standing there so reverently with Gabrielle. He was handling her so gently and sweetly. He treated my daughter like she was this precious angel,” Korine said.

Korine credited Leuthner with giving her the confidence to take her baby home. Gabrielle died seven days later, cradled in the arms of her family.

“Dr. Leuthner made me feel that Gabrielle’s death could be so natural and it didn’t have to be a panicked situation,” Kroine said.

“This is a very special calling for him,” said Renee Prink, spokeswoman for Children’s Hospital who nominated Leuthner for a Health Care Heroes Award. “His goal is helping families. He is so very compassionate. I hear that over and over again. Families praise his dedication. Even on his days off he’s up there helping when families request it.”

Leuthner, 44, also is highly respected among his peers, who tout him as a role model, a provider of ethical care and a person who has a unique ability to connect with families during what is often the most difficult time of their lives. 

“One of the messages I try to instill is to make sure a family knows I can’t take away their grief or pain, but I can help guide them through what are normal feelings, how this isn’t their fault and they’re still a loving parent,” Luethner said.

He is empathetic with families and doesn’t hesitate to acknowledge that he is a man of faith.

“We address those issues with families openly to find out about their spirituality and how that might influence their decisions,” Luethner said. “While some people’s concept of faith means you have to save every life, my attitude is sometimes it’s better to let go because there is a better place, and I’m OK with that.”

Leuthner’s work with the Fetal Care Program began during an annual review when the chairman of the hospital board suggested he become involved in end-of-life and palliative care for infants. 

“I basically went to our obstetric group and said let’s work together on the babies you find (with) birth defects, and let us help with the counseling and the meeting of the doctors,” Leuthner said.

The program has evolved since September 2000, as 90 percent of the patients are treated with an aggressive approach, while 10 percent of the counseling is palliative care.

“It is sad, yet our goal is to try to help support the families through that sadness and grief and really try to help them celebrate their motherhood and fatherhood at some level, accepting that this is a sad situation, but the parents wanted to be a mom or a dad and they didn’t want this,” he said.  

One of the priorities of palliative care, according to Leuthner, is listening to the families.

“I usually open a conversation with the family by asking what they’ve been hearing, what they understand and how they’re feeling,” he said. “I also try to give them hope in celebrating the length of time their child will have with them. We also try to understand and celebrate the life they wanted for the child.”

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