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Celebrating a life — however short

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Kathryn Doherty had been a patient at Tepeyac OB/GYN in Fairfax for all five of her children’s births. But 10 weeks into her sixth pregnancy, her unborn daughter was diagnosed with a life-threatening birth defect.

That’s when she encountered the clinic’s perinatal hospice care program, a way to support expectant mothers whose unborn babies have been diagnosed with serious or terminal medical conditions. The program accompanies the mothers and fathers through pregnancy, delivery and postpartum, and emphasizes making the most of their time together with the child.

“It’s a program that helps them through the entire way,” said Alana Csoka, one of two nurses assisting in the program. “Every life is special no matter how short it is.”

Once a baby receives a poor prognosis, Tepeyac doctors introduce the perinatal hospice care program. Csoka then meets with the parents and asks about the mother’s needs and situation, provides a notebook of resources and answers questions, such as what the new birth plan may look like for a child who is born with serious medical risks or who may not survive until term. 

As parents like Doherty navigate the uncertainty and fear for their baby, Csoka is there as an added support, assisting the parents to make the most of the time they have with their child.

“A lot of them tell me this is their time for them to take care of their baby,” said Csoka. “They’re going to be a mom while they can.”

During checkups, Csoka and the medical staff help the parents connect with their child.  The mother is provided ultrasounds and the chance to hear the baby’s heartbeat. Parents can opt for a “heartbeat bear,” a fuzzy teddy bear with a recording of their child’s heartbeat.

Csoka also asks families if they have special requests. One mother wanted to make sure she had a sonogram printout of her child’s face.

“Basically, we’d do everything we’d do just for a ‘normal’ pregnancy, but they get a little extra care,” said Csoka.

For parents who do lose their child before or during birth, the program organizes an interdenominational infant loss memorial service, where parents are invited to come, light a candle and share a few words. In the service at St. Leo the Great Church in Fairfax Oct. 16, about 30 candles glowed in recognition of the lives. Every mother was presented a certificate of life, honoring the months, weeks or days she had with her child.

Because of the level of support and expertise needed in high-risk pregnancies, the mother often is referred to a specialist at a nearby hospital — where abortion always is offered, said Csoka.

“A lot of times we have to send the patients to a specialist,” said Csoka. “I always have to warn them they will ask you to abort. I just want to prepare them. They will always offer it.”

When Doherty’s daughter, Margaret, was diagnosed with giant omphalocele, a defect where her organs grew outside her abdomen, she was referred to an OB/GYN specializing in high-risk pregnancies. 

“I felt a lot of pressure to terminate, I felt a lot of pressure to make big decisions quickly,” said Doherty. “The doctors pretty much guaranteed that my daughter would pass away before she was born.” The specialists were surprised when she continued to return for appointments instead of having an abortion.

During that time, Doherty said the perinatal hospice care program “gave me a great deal of comfort. They really emphasized just taking the time with your baby even if it’s going to be very short.”

Doherty said the doctors at Tepeyac always told her, “ ‘Your baby Margaret is in the safest place she can be right now.’ And that really gave me a lot of comfort because she wasn’t in pain and she wasn’t suffering.

“It doesn’t take away the pain and the anguish and the terror of it all, but it does give you a sense of peace.”

Despite the prognosis that she would not survive until birth, Margaret was born at 33 weeks gestation with giant omphalocele, underdeveloped lungs and a heart defect. After spending 10 months in two hospitals, she was able to go home with a ventilator and feeding tube. She is now a first grader at the Basilica School of St. Mary in Alexandria in a special education program.

“I think it’s a miracle and I was surprised my daughter did live,” said Doherty, who said her daughter is an example of why you never give up hope.

Bartlett can be reached at meghan.bartlett@catholicherald.com.

 

© Arlington Catholic Herald 2021