I emailed this when we had our final diagnosis about Dekar.  There was much uncertainty for about a month–not knowing what was going on with our baby when all had seemed to be going fine.  I can vividly remember the raw emotions that flowed when the doctor called with the final diagnosis.

“Our baby boy has been diagnosed with a chromosomal abnormality called Trisomy 18. It is caused by the presence of three — instead of two — copies of chromosome 18 in a fetus or infant’s cells.
What this means is that the prognosis for the baby’s survival is not good. Along with (and/or because of) Trisomy 18 he has a heart that is not formed correctly (most likely only two chambers, possibly three) along with a brain and kidneys that have not formed correctly. The dr. says there is a small possibility the baby could be born live but if he does, he would not likely live long. There is also a very good chance that he will die before birth. Thankfully, he is not in any pain now.
We have named him Dekar (pronounced Decker)–a name we picked out a while back. It means “pierce”. He certainly has pierced our lives–with unexpected pain, but mostly with an overflow of love for him. His tentative middle name is Ezri, which means “helped of God”—and God is truly his only hope now.
Please pray for peace for all of us. There is still much uncertainty in the coming days and it is all in God’s hands.
Marge and the rest of the Schmidts”

Side note:  We have never found out the gender of any of our other babies before birth. Dekar was the only one we requested to know the gender since we felt it was important to have a definite name for him beforehand.  We did use the name Ezri–it was very fitting, and still is.  We know God was with us through the whole thing, and even prepared the way before we even knew anything was wrong.  God gave the OB/GYN  “eyes to see” and the wisdom to check into something that seemed like a small thing—the baby seemed to be growing slower than my other babies…That actually is a whole ‘nother story in itself. 

After hearing the news of the final diagnosis we met with doctors several more times to find out exactly what was going on with Dekar and started formulating a birth/death plan–otherwise known as “Praying for a miracle, planning for a funeral”!

‘Miracle baby’ celebrates first year of beating odds

—A happy birthday for Joey—Bruce and Lisa Pagac with their “miracle baby,” daughter Joey. (Staff photo/MATT AIKEN)

By Matt Aiken

To her parents, Bruce and Lisa, it’s a miracle.

“I brought her home from the hospital expecting that I’d only have maybe a few more days with her,” says Lisa. “And here we are.”

Where they are is the maternity ward of Chestatee Regional Hospital, where little Joey is wearing a tiny birthday hat as she’s passed back and forth between adoring nurses and cooing doctors.

It was a little more than a year ago that Joey beat the odds by emerging into the world despite her diagnosis of Trisomy 18.

“Trisomy 18 children generally have a whole host of issues,” said Lisa. These issues can range from holes in the heart to non-functional kidneys. The disease is so severe that approximately 95 percent of babies that are diagnosed with it don’t make it through delivery. Others rarely live more than a few hours after birth.

Naturally, when the young Murrayville mother found out her child had the vicious disease, she was crushed.

After trying for eight years to conceive, Lisa and Bruce had turned to in vitro fertilization and watched Joey develop from an egg. So when the results of an early test came back, Lisa felt as though she already had a daughter.

“I had seen her look like an egg, then I saw her look like a frog, and then I saw her look like a porpoise,” says Lisa. “I mean, I watched her stages of development, and I was already attached. I couldn’t bear the thought of losing her. And I wasn’t going to make the decision to end her life. I would leave it up to God. And I’m glad that I did.”

Chestatee nurse Ellen Wren says the gutsy move of Lisa and Bruce is to be admired.

“I think what was so amazing was she was given a choice,” said Wren.

Joey’s pediatrician Dr. Stephanie Corn agrees.

“Their plan was ‘I want to hold this baby for 30 seconds, for 60 seconds, maybe a day, maybe two days,’” she says. “They lived in the moment.”

Joey arrived two weeks late. And the delivery process was brutal, says Lisa. She credits Dr. Robert Brown for getting her child through it.

“We almost lost her twice,” she says. “… But she came out crying. She didn’t require anything special.”

Normally Trisomy 18 babies need breathing and feeding tubes to live. Joey requires nothing like this. Instead she has spent the past year growing and developing with very few complications.

And, in turn, Lisa, Bruce and Joey have grown into a family.

“I’m just happy,” says Bruce.

Joey is too, adds Lisa.

“She’s really a very happy baby,” she says. “I’m so lucky. She’s so good natured.”

After returning home from the hospital, Lisa says she learned that she wasn’t alone in her plight when she met up with other parents of Trisomy 18 children on Facebook.

“After connecting with a bunch of people I found out, ‘Gosh, I’m not the only one.’ There’s so many other people out there,” she says.

In turn, Lisa says she hopes she can provide comfort to any parents-to-be who find themselves in a similar situation.

“It’s an individual decision, and I would never criticize somebody over choosing the opposite of what I chose,” she says. “But I would hate for someone to choose that path, thinking there was no hope.”

As she says this, proof of this hope is still wearing a small pink birthday hat and making the rounds among a beaming hospital staff.

“She’s a year old,” says a smiling Lisa. “A year and a day. And tomorrow will be a year and two days.”

Charlize lived for 58 beautiful days!

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Faces of Trisomy  are portraits by Jude Wolpert taken at SOFT conference in Roanoke, Virginia July 2009. The purpose of awareness is to encourage others to see our children as just what they are, kids and young adults, and not as their diagnosis. Receiving a diagnosis of Trisomy is hard enough for any parent. Today with medical advances, early intervention, therapies and inclusion in education we can make others aware of the possibilities for our children given the chance.

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Dekar gave us a lifetime of love–he lived for just over eight hours

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Darcy Anne lived for 15 days!

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You can find other Trisomy 18 babies on YouTube.

Do you have a Trisomy 18 story of hope to share?  Please send me your story through the contact link at the top of the page.