Couple embrace joy as they live through troubled pregnancy

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She is sitting on a sofa in her beautiful house perched above the Ohio River, rubbing her hand over her pregnant stomach, her husband and a box of tissues by her side.

Then, while the sounds of river traffic float up through the windows from below, Kelly Frey begins to talk about that day in April at her ultrasound appointment.

The baby was 13 weeks old. A prior ultrasound at 9 weeks had gone smoothly, so at 12 weeks, the 36-year-old first-time mother-to-be told all her friends, family and colleagues at WTAE, where Ms. Frey anchors the early morning news, that she and her husband Jason Luhn were expecting.

She still remembers how cool the ultrasound jelly was on her belly, the warmth of her husband's hand, and the whoosh, whoosh of the baby's heart, like the gentle thrum of a dishwasher.

"The radiologist showed us his little body, this dancing little figure on the screen," she said. "And we saw the heart."

Then the radiologist stopped, hesitated and said, ever so gently, 'I need to go get the doctor, because I'm seeing something in the head region that concerns me.' "

At that instant, everything became a blur, as the couple found themselves alone in the dark room.

Her mind raced: What was this? Something wasn't right? What was going on? What did it mean?

"I was lying there," Ms. Frey said, weeping quietly as she spoke. "I mean, what are you supposed to say? I wanted to stay in that room forever, but I also wanted to get out of there. Then I remember looking at Jason and saying, I think we need to pray."

Since that rainy day five months ago, Ms. Frey and her husband have made their peace with the diagnosis that followed. Their baby had a severe form of holoprosencephaly: a major defect of brain formation where, instead of normal brain tissue, the skull is filled and distended with extra cerebral spinal fluid.

Their son -- they've named him Bennett Ryan -- may not live long after birth, but no matter. They have decided she will carry the baby to term -- her due date is Oct. 26 -- "because he's our little guy, a precious life for us," she said.

Initially, they had decided to terminate the pregnancy, but when Jason, a major in the Air National Guard, was called by their insurer, telling them the military doesn't cover abortions unless the health of the mother is at risk, they saw it as a sign to see the pregnancy through.

"We had to step back," Ms. Frey said. "We felt we got that phone call for a reason."

The next day, they visited Dr. Harlan Giles, a maternal fetal medicine specialist who had originally diagnosed the holoprosencephaly, to get a followup ultrasound.

"I had been wondering, how am I supposed to go full term with a baby who is supposed to die? But I remember lying there and looking at the image on the screen and thinking, we can do this, we can go on."

Their choice might not be everyone's, the couple is quick to add. While both are opposed to abortion, they both stressed that each couple's situation is dfferent.

"I would never, ever judge anyone in this type of situation," Ms. Frey said.

Their specialist, Dr. Giles, agrees.

"I don't recommend anything" when meeting with couples whose baby has a terminal diagnosis. "I tell my patients what the facts are, as best we know them, but each patient has to make the right decision for them at the right time. Some would choose to terminate, and that certainly is a medical option, while others would wait to see what happens."

He knows one thing for certain, he added -- "that nothing is ever completely certain in these cases. Each baby is different. The baby could expire before term, but in this case I don't think so."

Some babies with this condition can't make the transition to breathing on their own because they don't have sufficient brain tissue to regulate basic functions, so they die shortly after birth, he said. Others live for only a few days, and in even fewer cases, some babies will continue to survive for a number of weeks or even months.

Holoprosencephaly, one of a range of cephalic defects involving brain formation in fetuses, usually occurs between 6 and 9 weeks of gestational age, Dr. Giles added. There's no known cause and it's quite rare.

Ultrasound has not shown any genetic abnormalities in the baby; testing after the birth will confirm that for certain.

"The chances of this happening again are very small," Dr. Giles said.

The fluid building up in the baby's brain is causing the head to be bigger than it would be at that stage of development, which may make a Caesarean necessary. But if the head stabilizes and doesn't continue to grow, Ms. Frey may go to full term and even deliver naturally. A lot will depend on the coming weeks.

From now on, it gets difficult. Last weekend the couple visited a neonatologist at UPMC Mercy Hospital -- where Ms. Frey will deliver -- to develop a birth plan, a critically important step in these cases.

Decisions about whether to intubate or not, put the baby on a ventilator or not, to take every measure to keep the baby alive or just keep the baby comfortable -- all of those are questions that need to be decided in advance, says Michelle Clements, coordinator of the Fetal Diagnosis and Treatment Center at Magee-Womens Hospital of UPMC, which cares for pregnant women with fetal anomalies.

Ms. Frey's care is being coordinated by Dr. Margaret Larkins-Pettigrew, an ob-gyn at Mercy, which has its own neonatal unit.

"We have watched Kelly and her husband bond with this baby throughout this whole pregnancy," said Dr. Larkins-Pettigrew, "and her spirits have been so uplifting to all of us who are seeing her go through this, not knowing what the fate of this baby might be."

It's been an emotional time for Ms. Frey and her husband, who find themselves cycling from laughter to tears numerous times in a single day. Ms. Frey said she hopes to continue working up until the birth.

"We're so joyful, but there's such a hard side to it, too," she said, pointing to Bennett's ultrasound photos -- "my baby pictures" -- pinned to her refrigerator door.

"There are so many variables, and the first is ..." -- she pauses to compose herself -- "whether he'll be able to breathe on his own. If it doesn't get to that point, we will be there with him and our family will be there with us and we'll make sure that he's not in any, any pain whatsoever."

"We pray for a miracle every day, not even knowing the complications that will come along. It's one step at a time."

Mackenzie Carpenter can be reached at 412-263-1949 or at .


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