Todays Helping of Chicken Soup for the Soul

[Guest guest]

Miracle Baby

By Bill Holton

When Sara Sieber was sixteen weeks pregnant, she and her husband, Tim,

went

to her obstetrician's office for a routine ultrasound. The couple was

looking

forward to finding out whether their baby would be a boy or a girl. The

sonogram showed that Sara was carrying a son, her fourth. But there was no

time

to celebrate the happy news, because the scan also revealed a serious

defect.

Sara's baby's diaphragm, the thin wall of muscle and connective tissue

that

separates the abdomen from the chest, was not forming properly. The

condition

is known as congenital diaphragmatic hernia. Minor cases can usually be

repaired surgically shortly after birth. But the entire left half of Sara's

baby's diaphragm was missing. His tiny stomach and liver were pushing their

way

into his chest cavity, leaving his tissue-thin lungs with absolutely no room

to

grow.

" Your baby has virtually no lungs at all, " the neonatologist explained

as

he reviewed a second, more detailed set of ultrasounds. " I'm afraid there's

no

hope. I would strongly recommend that you terminate the pregnancy

immediately. "

" I can't do that! " Sara gasped, clutching Tim's hand in a

white-knuckled

grip.

" If you carry your baby to term, he will almost certainly suffocate to

death at birth, " the neonatologist said sadly. " There's a small chance we

could

keep him alive for up to several months on a ventilator, but then he would

die

anyway. "

" I felt like the whole world had dropped out from under me, " recalls

Sara.

" I'd suffered two previous miscarriages, but they'd happened early in my

pregnancies. This was different. I could feel this baby moving inside me.

I

was already in love with him, and now the doctor was telling me I would

never

get to hold him in my arms. "

As Sara and Tim stood to leave, both of them in tears, the doctor

remembered something he'd read in a recent medical journal. " There's a

surgeon

in California who's trying to operate on babies with this condition while

they're still in the womb. It's highly experimental, and I don't believe

he's

had much success, but I can make a few calls, at least. "

Sara wasn't hopeful. " By the time we got home, I was already grieving

the

loss of my baby, " she says. " I didn't want him to be born, because as soon

as

he was born I knew I was going to lose him. "

Four days later, the doctor telephoned with a name: Dr.

on

with the Fetal Treatment Center at the University of California at San

Francisco. Sara and Tim decided they had little to lose, so in February of

1996, the couple flew from North Carolina to California for an evaluation.

As babies develop inside the uterus, fluid forms in their lungs and

flows

out their mouths, contributing to the amniotic fluid that cushions and

protects

the growing fetus. Dr. on proposed to use this very fluid to help

Sara's

baby's lungs grow bigger. The surgeon would temporarily close off the

baby's

trachea. The fluid would then build up inside his lungs, and the mounting

pressure would cause them to expand like inflated balloons.

During the previous two and a half years, Dr. on had attempted

the

procedure on eleven babies. Only one had survived. But in ten of these

cases,

on had opened the mother's uterus to operate on the fetus, which

usually

precipitated a preterm delivery before the babies' lungs had any time to

grow.

More recently, on had devised newer, less invasive techniques.

Instead of cutting open the mother's uterus, on was now prepared to

perform the surgery orthoscopically. So far he'd tried the improved

techniques

on only one baby, which had subsequently died.

" You're an excellent candidate for the surgery, but I'm not going to

give

you any false hopes, " on told the Siebers.

During their visit Sara and Tim also consulted with a hospital

obstetrician

and a social worker. Both strongly advised the couple not to proceed.

" We've seen what these mothers go through, both emotionally and

physically,

and their babies die, anyway, " the obstetrician argued.

The social worker reminded Sara that she had three children back home:

Timmy, now nine, , seven and , four. " You'd have to move to San

Francisco for at least six months. Imagine how that long an absence might

affect them. "

During the flight home, Sara made up her mind. " I'm not going back

there, "

she told Tim. From the start, Tim's primary concern had been his wife's

health.

But thus far all of the mothers had come through the surgery without serious

complications. " This is the only chance we have to help our baby live, " he

reminded Sara. " Maybe we should give this more thought, discuss it with our

doctor back home. "

There wasn't much time. Sara was already twenty-four weeks pregnant.

For

the surgery to succeed it had to be done by week thirty, because after that

the

baby's lungs would begin to produce increasingly less of the vital fluid.

Sara and Tim prayed over their decision. They consulted their

obstetrician, who told them, " I've seen too many babies choke to death

because

they simply don't have enough lungs to draw their first breath. If there's

anything you can do, no matter how slim the chances . . . "

The Siebers's minister agreed. " You've been given the knowledge that

this

surgery exists. You have to do whatever you can, and then trust in God to

do

the rest. "

" I still wasn't any more hopeful, " Sara remembers. " But I thought,

maybe

the doctor could learn something that might eventually help some other baby

to

survive. "

The couple left their three sons with Tim's parents, and before they

returned to California, they named their unborn child . " We named him

in

honor of the Bible story of Hannah, who dedicated her son's life to God, "

says

Sara.

Dr. on began the four-hour operation by making a transverse

C-section

incision in Sara's abdomen. A sonographer then helped him gently maneuver

the

baby face-up inside the womb and suture a single stitch through his chin to

hold

his neck in place.

Next, on made three pencil-thin holes in Sara's uterus and

amniotic

sack with surgical trocars?hollow tubes through which he manipulated his

instruments, a saline pump to keep the amniotic fluid clear and a camera to

monitor his every move. With slow precision the surgeon guided a pair of

long-

handled orthoscopic scissors toward the baby's neck and snipped a single,

small

cut. He parted the skin, and then used a special, titanium lip to close off

the

baby's trachea.

" That should do it, " on announced to his team as he prepared to

close. The operation had gone remarkably well, and the surgeon felt

cautiously

optimistic.

Dr. on hoped that would remain inside his mother's womb

until

he reached his thirty-fifth week - five weeks shy of full term. But the

moment

Sara came out of the anesthesia she felt sticky and wet.

" What's wrong? " she groggily asked a nurse.

" Your water just broke, " the nurse replied, and hurried off to find the

doctor. Despite Dr. on's best efforts, the trauma of surgery had

taken

its toll. Sara's sack had ruptured, and preterm labor was imminent. Yet it

wasn't uncommon for a twenty-eight-and-a-half-week preemie to survive with

the

aid of warming beds and respirators. But not . With no time for the

trachea clip to do its job, Sara's baby seemed fated to die.

But then something remarkable happened. Somehow, the baby shifted

position

inside the sack, and his tiny head stanched the leak. Slowly, the amniotic

fluid began to replenish itself. The pressure inside 's lungs also

continued to rise, and within a few days sonograms revealed substantial lung

growth.

" God had intervened, and I was convinced everything was going to be

fine, "

says Sara. But on the twelfth day post-surgery, a second complication

arose.

The morning Sara was scheduled to be released from the hospital to a

nearby

Mc House she developed a painful infection that put both her

life

and the baby's at risk. This time there could be no reprieve. Live or

die -

had to be born.

Dr. on performed a partial C-section, delivering only the baby's

head

and neck. He removed the titanium clip and sutured shut the skin. He put

in a

breathing tube connected to a high-frequency respirator that delivered over

three hundred gentle puffs of air every minute. Only then did the surgeon

complete the delivery and cut the umbilical cord.

was nine weeks premature, and weighed a mere three pounds, nine

and

a half ounces. " He made it this far. That's got to be a good sign, " Dr.

on insisted, but other members of the neonatal ICU staff weren't

nearly so

hopeful.

" You need to prepare yourself. He's not going to live, " more than one

doctor told the Siebers bluntly.

" They kept so heavily sedated, for the first two weeks of his

life I

really couldn't tell if he was alive, " recalls Sara. " We prayed and prayed,

but

no matter what happened, Tim and I both agreed we'd made the right decision

to

try. "

Hour by hour, day by day, little defied the odds and clung

tenaciously to life. When he was a week old Dr. on performed surgery

to

install a Gore-Tex patch to replace the missing left half of his diaphragm.

Two

more operations would follow - the first to repair a bilateral hernia and a

second to correct a bowel obstruction.

When was five weeks old, Sara finally got to hold him in her

arms

for the very first time. " His skin was so translucent, I could trace the

map of

blood vessels across his tiny body, " she says. " I told him how much I loved

him, and all about his three brothers who couldn't wait for us to bring him

home. "

Even at two and a half months, Sara was still being told by the NICU

doctors, " Don't get your hopes up. He's still not out of the woods. " But

's lungs continued to develop and grow stronger.

Then, late one evening, Sara and Tim received a phone call at their

hotel

room. " You might want to come back to the hospital, " a nurse told them.

" We've

removed the breathing tube. is breathing on his own. "

" His feeble cries sounded like a tiny, lost kitten, " Sara vividly

recalls.

" After twelve long weeks of prayer and worry, I couldn't imagine a sweeter

sound. "

Two weeks later, was strong enough to fly home to North

Carolina.

Members of the Siebers's church met them at the airport carrying a large

sign:

" Welcome home, ! We love you! " Fellow passengers who had heard the

story

applauded and cheered as Sara deplaned with her precious cargo cradled

snugly in

her arms.

That was in July of 1996. Today, more than two years later, Sara's

youngest has grown into a happy, active child who loves riding his tricycle

and

playing on the backyard swing set with his three brothers.

's right lung has reached normal size for his age, though his

left

lung is only about one-fourth of the normal size. " The Gore-Tex patch will

need

to be replaced as he grows older, but he hasn't had a lot of problems they

thought he might have, " says Tim Sieber.

" We're all very pleased with how well has done, " says Dr.

on.

" He's been a true inspiration for our ongoing work. " Indeed, since 's

birth, on and his team have used their refined surgical techniques to

operate on eleven more infants with congenital diaphragmatic hernias, and

eight

are alive and doing well.

One who was particularly moved by 's success was the hospital

social

worker who had originally tried to talk Sara out of undergoing the surgery.

" The day before I got to take home she came by and asked if she could

hold him, " Sara relates. " There were tears in her eyes, and she kept saying

again and again, 'You're nothing but a miracle. You're nothing but a

miracle.' "