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"I never imagined Hailey could be as amazing as she was since she was so sick. But she was the BEST baby and daughter I could have asked for. She brought me so much joy my heart overflows. Even after her death when my heart is broken because she’s not here, the memories I have of her make my heart overflow with joy. She was simply awesome," from She Was Always in His Hands: Hailey Marie
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Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.
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Giving Our Baby to God |
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by Jake Hallman |
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Through many dangers, toil, and snares. I have already come. ‘Tis grace hath brought me
safe thus far and grace will lead me home.—“Amazing Grace”
I kept the hymnal open long after the song was over and kept repeating the verse above in
my head. I had no idea what the next five months were going to bring, but I quickly identified the third verse of “Amazing Grace” as my battle cry. Four months with Tara, my wife, in a hospital over an hour away; four months playing Mr. Mom with a 4-year-old while
working full-time; four months waiting and hoping our second son was going to be all right.
The phone call every parent dreads came mid-December 2002 during dinner. “It’s about the baby,” Tara’s obstetrician said. “There’s probably nothing to worry about, but
we’d like you to come in for another ultrasound.”
Despite the doctor’s reassurance, we both seemed to know this pregnancy wasn’t going to be without complications.
Two ultrasounds later, a trip to the Hospital of the University of Pennsylvania and The Children’s Hospital of Philadelphia and the results confirmed what Tara and I had been dreading for a month: our second baby had spina bifida. The most common birth defect, spina bifida affects one in every 2,000 births and is caused when the spinal column does not fuse around the 28th day after conception, before most women even know they’re pregnant.
Preliminary tests showed the defect on our son’s spine was low enough that he wouldn’t
be confined to a wheelchair. But I wasn’t happy with that at the time.
As a member of a Mennonite church who attends every week, has taught Sunday
school and helped out with the junior and senior high youth, I felt cheated. All that time
in the pews and working for God—this wasn’t supposed to happen to us. After being blessed with our first perfectly healthy son, Zeke, we figured the second time around
would go as smoothly as the first.
But it didn’t.
For the next month I questioned, screamed, cursed and held God accountable for our son’s
spina bifida. As an omnipotent and omniscient
being, God knew exactly what he was doing, and I
wasn’t happy with it. That month was a spiritual
nadir; I went to church, just didn’t pay attention or
put my heart into anything but the ending.
After trying to deal with the news all on my
own, I finally decided I needed some help. So, with
God and me not on speaking terms, I turned to the
next logical person, my wife. Tara said she coped
with the news by giving the problem to God. She
said this all had to fit into God’s plan and that if
there’s anyone we should trust our child’s life
with, it should be God.
Without any better ideas, I decided to give it a shot. One night, while lying in bed, I prayed a simple prayer asking God to shoulder the burden I’d been trying to bear on my own. I threw myself at the mercy of God, saying I’d had enough and it
was time for him to take over.
And it worked.
There wasn’t an earth-shattering reversal of the test results, and I didn’t all of a sudden have a new outlook on life; but after the prayer, things went a little easier. We soon found out there was an experimental procedure in which doctors could operate
in utero to close our son’s back and prevent amniotic
fluid from further damaging the exposed nerves of the spinal cord. The surgery also lowered the chance of needing a shunt, as children with spina bifida commonly develop water on the brain (hydrocephalus).
Performed at only three places in the world, fetal surgery was still in the experimental stages when we signed up to make our son the 55th child at Children’s Hospital of Philadelphia to be a spina bifida fetal surgery baby. Though a generally conservative couple from a particularly conservative Mennonite congregation in eastern Pennsylvania, we felt led
to go through with the surgery.
And though the surgery was good news, it was no quick fix.
Complications included preterm labor, which
could mean death for our son; a significant loss of
blood in the high-risk surgery that could kill my
wife, or combinations of the two.
But with the help of God, all went as planned. And on Jan. 23, 2003, neurosurgeons, obstetricians and a swarm of nurses helped open Tara’s uterus, position our anesthetized baby and close the twoinch gap on his back with a patch of synthetic skin. At 23 weeks, the time of the surgery, our baby, whom we named Brett, was less than 12
inches long and weighed less than a pound.
Bad news came a few days later, when Tara’s
membranes ruptured, making the possibility of
preterm labor a reality any day.
Tara, who managed to keep the same levelheaded
approach of leaving God in control, dealt with
strict bed rest for 11 weeks. I, meanwhile, found
out what it’s like to be a single parent as I shuttled
Zeke to relatives, worked half-days at the weekly
newspaper where I work and took Zeke to the hospital
on weekends to see his mom confined to a hospital bed.
Brett and Tara managed to hold out until 32 weeks; 11 weeks longer than the doctors expected.
Our second child was born April 2, 2003, at 16
inches, 5.1 pounds.
As difficult as the months were, we as a family felt closer to each other and God. The most powerful example came when the three of us (Brett was still in the hospital) spent the first night in the
same room at the Ronald McDonald House in Philadelphia. All three of us fell asleep crying as we realized what we had missed out on when Tara was in the hospital—being together as a family. Once again I asked God to lift the burden from our family.
He responded a few hours later in a dream. In the dream, I was sitting in a field looking up at the clouds. Suddenly the clouds formed into the unmistakable face of Jesus. The lips on the face slowly moved, and I heard a voice in my head saying, “Peace be with you, peace be with you.”
Friends, family and members from our church didn’t understand how we had gotten through the
turbulent four months. Looking back, I’m not sure
either. All I do know is that God knew what he was
doing when he blessed us with another perfect
son in his likeness.
Update: Brett is a normal 3-year-old doing everything normal 3-year-olds do: walking, running, talking and annoying his older brother Zeke. The onlysign from his ordeal is the scar on his back and problems with bowel and bladder control.
This article first appeared in The Mennonite on July 18, 2006. Reprinted with permission of the author.
Editor's note: If you enjoyed this article, you may also be interested in reading, "Let Me Decide"
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by
Alison
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We were thrilled and terrified to discover we were expecting our third child.
I had miscarried our first baby at 12 weeks, and our second son, Will, died fifteen minutes after he was born because of a lethal genetic condition. (Will’s story is also on BNA under the heading Meckel-Gruber Syndrome - Sing Me to Sleep.)
Will’s condition is autosomal recessive, which means that every child my husband and I conceive has a 25% chance of inheriting this fatal condition. Needless to say, when I became pregnant again, we were full of dread that this child would also be doomed to leave us within minutes of birth.
We were told at the 14-week scan that all was looking very good, and the doctors were cautiously optimistic that we might have escaped MGS this...
read the rest
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