Still, Queen and her family were having a hard time with all that was happening.

Her fiance Keith had become withdrawn since the diagnosis. Extended family members didn't understand why Queen sometimes chose not to discuss what she was experiencing. They wanted to throw her a baby shower, but Queen didn't want one.

"If [Kirsten] didn't make it, I didn't want to be in a house with a bunch of baby clothes and baby furniture," she said.

And Queen suffered constant anguish thinking about the daughter she might never get to hold alive.

One afternoon, she was sitting in her apartment television when the phone rang. She picked up to hear a soothing voice: Shirey from Gilchrist Kids. Shirey had reached out, despite Queen's reluctance to contact her.

The social worker asked some simple questions: How are you feeling? Is there anything bothering you? For Queen, talking about what was going on brought clarity to her situation and a sense of relief.

"She made it easier to concentrate," Queen said. "She made me realize that whatever happened, I could deal with it."

Shirey visited once a week, assuring Queen that it wasn't selfish to shut out relatives sometimes. Shirey said it was normal to want to be alone, to feel anxious and out of control. She also helped Queen's fiance open up so the couple could support each other.

As they met, Shirey got Queen to understand that she had to accept that her baby might not survive. She coaxed Queen into picking a funeral home — such details would be harder to deal with once the baby was born, Shirey said.

Most importantly, she helped Queen think through a birth plan — a key part of the grief process. Such plans outline how a mother envisions labor and delivery, and list what care the baby should receive after birth.

Queen's plan called for doctors to do "whatever was necessary" to keep Kirsten alive. She also wanted to bathe, dress and hold the baby right away — she knew Kirsten's life might be measured in minutes.

'That is your time'

As the months of pregnancy passed, Shirey also worked with the Mohlers, encouraging them to bond with their child. Talk to the baby, she said. Rub Jenny's belly and interact with him anyway you can, she urged husband John.

"Your time is limited, so during pregnancy, that is your time," Mohler said. "That is your time to love the baby, to bond with the baby and parent while the baby is in the womb — and while the baby is still alive."

Jenny, now 32, had no illusions about the chances of their baby's survival — the condition occurs in 1 in 20,000 to 50,000 newborns, and few survive. It was the first case Sorra had seen since she began practicing medicine in 1997. The Mohlers had to accept that they wouldn't have long with their baby.

The couple felt unconditional love for their unborn child, and drew strength from their Catholic faith during the pregnancy.

After finding out about their baby's illness, the Mohlers had taken the afternoon off from work and made the 15-minute drive to the Church of the Immaculate Conception in Towson. There they joined others in the adoration chapel, a small building connected to the main church where parishioners go throughout the day to pray.

They sought comfort from God in the modest room with a few rows of simple wood enchairs and stained-glass windows, praying for their unborn child and their family. Then they went to a park near their Catonsville home where they sat quietly, sometimes holding hands, sometimes crying. They worked through a range of emotions — fear, shock, sadness, grief — as they mustered the strength to break the news to their families.

"It was then that we most mourned the loss of our dreams for our son, it was then that it hit me," Jenny Mohler recalls.

Those moments were the hardest the couple, married since 2009 and together five years prior to that, had ever faced together.