Perinatal hospices help mothers cope with the impending deaths of their babies

Baltimore two mothers deal with a roller coaster of emotions as they carry babies that have been diagnosed with conditions that doctors say they will likely die from before they can walk or talk

  • John and Jenny Mohler hold hands on an embroidered blanket bearing the name of their son Tuesday, Mar. 26, 2013. They were the parents of Joseph Angelo, born Dec. 13, 2012 and lived for an hour.
John and Jenny Mohler hold hands on an embroidered blanket bearing… (Karl Merton Ferron / Baltimore…)
July 27, 2013|By Andrea K. Walker, The Baltimore Sun

Jenny Mohler lay on an examining bed holding her pregnant belly at Sinai Hospital in Northwest Baltimore. Sonogram pictures hung from a machine in the right corner of the room. She was nervous, unable to block a feeling of uneasiness as she waited for a specialist to come in and decipher the images.

Just two days earlier, the Catonsville resident had received a call while sitting at her desk at a Catholic Charities health clinic in Baltimore, where she worked as a school counselor. There were developmental concerns about the baby, Dr. Mary Ann Sorra told her. The baby's head was misshapen and its limbs short. Don't worry, Sorra told Mohler, but more tests were needed as soon as possible.

Mohler, who was 19 weeks into her pregnancy, began a frantic Internet search, typing "developmental disorders" and "short limbs" into her office computer. Could it be Down syndrome? Or maybe dwarfism?

As she and husband John, now 33, waited at Sinai that September day last year, he tried to assure her that nothing major was wrong. She wanted to stay positive, but it was difficult.

A perinatologist who deals in high-risk pregnancies came into the room to deliver the diagnosis: Your baby has thanatophoric dysplasia, they remember him saying.

The Mohlers' unborn child was suffering from a rare disorder — whose name meant "death-bearing malformation" in Greek — that would prevent the rib cage from growing, smothering the heart and lungs. The baby would likely be stillborn. Or it would die shortly after birth, unable to breathe on its own.

The baby, whose gender they didn't even know yet, had just been given a death sentence.

Mother, baby at risk

Two months later, across town at Johns Hopkins Hospital, Kimberly Queen lay in a bed — 30 weeks' pregnant and fighting for her life. Machines beeped all around her, monitoring her blood pressure, heart rate and other vital signs. A nutritional tube ran from her arm, trying to nourish a body so frail that her organs were on the verge of shutting down.

Queen's health was deteriorating from hyperemesis gravidarum, a condition that causes severe nausea and vomiting, making it hard for expectant mothers to keep enough nutrients in their bodies. The Elkridge resident had cycled in and out of the hospital her entire pregnancy, and just days before Thanksgiving was admitted to Howard County General Hospital. Her symptoms were so severe that doctors transferred her by ambulance to Hopkins for more specialized care.

A small group of doctors in scrubs entered her room to give Queen and her fiance, Keith Brown, now 34, some news about her fourth child. Brown held her hand while two doctors sat in chairs near the bed. One did most of the talking.

An ultrasound, the doctor said, showed blood and fluid around the brain of the baby Queen had already named Kirsten. The baby's weight was below normal, and she probably wouldn't survive the pregnancy. If she did, her quality of life would not be good. She might not be able to breathe on her own, the doctors said, urging Queen to consider terminating the pregnancy.

Queen, a certified nurse technician at Johns Hopkins Bayview Medical Center, took the news as if she were on the job. She felt the doctors were talking about some other patient, someone other than her. She found herself explaining to her fiance what the doctors were saying, but not fully absorbing the news herself. She said little to them.

But in the middle of the night, her maternal instinct kicked in. She woke up and could only think of one thing: Her baby might die.

Source of comfort

Queen and Mohler discovered themselves in a spot they would never have predicted: grieving instead of celebrating new life and growing families. Terminating the pregnancy was not an option for either. Mohler cited her strong Catholic beliefs. Queen wanted to give her baby every chance to live, no matter the odds.

Their predicaments would become the most trying they had ever confronted. Doctors encouraged Queen and Mohler to connect with a hospice program to handle the myriad of emotions.

Both women turned to Gilchrist Kids, a division of Towson-based Gilchrist Hospice Care, one of a handful of hospices in the area with a perinatal component. Through the program they were connected with social worker Briana Shirey who became lifeline and source of comfort through their pregnancies.

Queen, now 33, said her doctors focused on the possibility of terminating the pregnancy, and pushed palliative care for the baby to prepare her for death after she was born. But Queen did not want to think about that; she even ignored advice to contact Gilchrist.

"I was feeling my baby moving around in me," she recalled. "I had already seen the sonogram with her features. She had the nose of my son, the mouth of my daughter. In order for me to accept the possibility that my child wasn't going to be here anymore, I had to know I did everything I could to make sure the doctors did what they could to save her."

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