“Five months ago, to the day and hour, Ben and I were in the hospital lobby, planning our son’s baptism,” said Janelle Gergen. “Today, we’re sitting next to the baptism font in church talking about his birth and death. It’s a reminder to us of the Lord telling us when and where we need to be.”
18 Weeks, Trisomy 18
Janelle’s second pregnancy was progressing well. She saw family physician Dr. Andrew Gasparini at Altru Family Medicine Residency for regular prenatal care. She and Ben had been married eight years and already had a son, Peter, seven.
At their 18-week appointment in November 2012, Dr. Gasparini noticed something suspicious on an ultrasound. He sent Janelle to Altru Main Clinic for what turned out to be an almost three-hour ultrasound. The next day, Dr. Gasparini asked Ben and Janelle to come in for a meeting.
“He was so kind, patient and gentle in speaking with us,” said Janelle. “He shared that our child had problems. At the time, he knew our baby had cysts on the brain, spina bifida and intestinal problems. Our world stopped.”
Dr. Gasparini referred the Gergen’s to a maternal fetal medical specialist in Fargo for a more extensive ultrasound and testing. During amniocentesis, they learned they were expecting a boy. They also found out he had trisomy 18, a condition caused by an error in cell division. Trisomy 18 affects many major organ systems, causing a high mortality rate before or shortly after birth.
“This second pregnancy went from preparing for and welcoming life, to preparing for life and then preparing for death,” said Janelle. “Ending the pregnancy was not an option. We wanted to uphold the dignity of our son and celebrate his life, no matter how short that may be.”
Ben and Janelle began working on their birth plan, knowing they would have limited time with their son once he was born. Dr. Gasparini assembled a team of doctors for their care, including obstetrician and gynecologist Dr. Michael Brown and neonatologist Dr. Durga Panda. He also put them in touch with Altru’s Infant Bereavement Program.
“We had specific requests, and our medical team was instrumental in carrying them out,” said Janelle. “Dr. Panda and Dr. Gasparini were helpful in giving us options in a nonjudgmental way. It was a relief knowing they respected and supported our wishes.”
Ben and Janelle elected to have a cesarean section so their son could avoid the stress of labor. They also requested no mechanical ventilation and looked to Dr. Panda for help understanding the “Do Not Resuscitate” form.
“Anticipating something as serious as this is difficult, for parents and physicians,” said Dr. Panda. “My job as a physician is to listen to what the parents want and to advocate for their child. It was important that we discussed things in understandable terms and that Ben and Janelle’s wishes were respected.”
They requested, and were granted, permission to have their spiritual director, Father David Baumgartner, as well as Leigh Schrage, a photographer from the Now I Lay Me Down to Sleep Foundation, in the delivery room.
“It meant a lot to us that Altru was willing to let that happen,” said Janelle.
On April 12, 2013, the Gergens arrived at Altru’s Family Birthing Center to deliver their full-term son.
“From the moment we checked in until the moment we left, everything went smoothly,” said Janelle. “Life is something to celebrate, and the OB floor is filled with reminders of how exciting it is to have a baby. Everyone we interacted with was very respectful of our situation.”
At 12:18 p.m., JohnPaul Robert Gergen was born. He weighed 4 pounds, 15.8 ounces and was 16 inches long, a good size for a trisomy 18 baby. Dr. Panda and a team of nurses began their assessments.
“Right before surgery, JohnPaul’s heartbeat was in the 140s,” said Ben. “Within seconds of his umbilical cord being clamped, it fell between 10-20. Dr. Panda told us, as compassionately as one could, that he wasn’t going to be alive long. He reassured us that JohnPaul wasn’t suffering, nor was he in any pain.”
“Nurse Mary Adkins gave JohnPaul a bath shortly after he was born,” said Janelle. “It was the only one he ever had. When I look at that picture, I know it’s Mary’s hand washing him.”
A few minutes after birth, Fr. David administered baptism.
“JohnPaul opened his eyes and make a few sounds at that moment,” said Ben. “He spoke to us.”
Once in recovery, Ben brought Peter in to meet his brother.
“We had told him earlier that the baby wouldn’t live at our house, but in heaven instead,” said Janelle.
After Peter went back to the waiting room, a nurse listened again for JohnPaul’s heartbeat. He was gone.
“JohnPaul lived about an hour,” said Janelle. “We know suffering is part of the human condition. Amidst suffering, we look to find joy. We found that joy in the hour we had with our son. We rest easy knowing it was easy for him.”
Sharing Life and Death
Initially, Ben and Janelle didn’t want to share the details of their pregnancy with anyone. When they found an outpouring of love and support, they’re glad they did.
“It was the people surrounding us that allowed us, and still allow us, to get up every day,” said Janelle. “Opening up lets us share our son with other people. We feel blessed to be chosen as his parents.”
“As difficult as it was to hear the news in advance, it helped us process through our emotions,” said Ben. “We were able to lean on each other as a couple. We go day by day, the best we can.”
After JohnPaul died, Janelle took the outfit he had worn and placed it on the teddy bear she received.
“I didn’t understand ‘empty arms syndrome’ until I experienced it myself,” said Janelle. “When I’d encounter families and newborns in the community, it was difficult. Having the bear helps. It gets squeezed at night when I fall asleep.”
The bear, along with other support items, is one way Altru’s Infant Bereavement Program helps grieving families.
The Gergen’s do not regret taking their pregnancy to full-term. They’re glad they researched their options for infant palliative care and advocated for their desires.
“Altru helped us fulfill our birth plan,” said Ben. “We appreciate how delicately our situation was handled. Without our doctors and nurses, our experience and what we remember of the experience would be drastically different. Their love and care was above and beyond.”
“It was all the little things,” said Janelle. “Dr. Gasparini knew how much joy it brought us to hear the heartbeat during appointments. The nurses made extra foot molds for our family and friends. They made accommodations on the OB floor so our family and friends could be with us. The decisions we made as parents in how to support our son’s short life were respected by Altru, especially during birth. It made all the difference.”
To watch JohnPaul’s full story from beginning to end, see this video by Janelle.