"I WANT OUR BABY TO LIVE"
by Diane Craver, copyright 1991
On August 24th, 1976, my husband Tom and I left for Bethesda Hospital in
Cincinnati. We were expecting our first baby, and my contractions were
three minutes apart, and a few farther apart.
As Tom was driving, he said, "Let's pray the Rosary together, and we can
stop praying when you have a contraction."
After we finished saying the final prayer of the Rosary, I thought of the
day being August 24th and remarked, "It's St. Bartholomew's Day. I bet our
baby will be a boy." We had chosen the name, Bartholomew Thomas, before we
realized that St. Bartholomew's Day was in August.
"Hey, that's right. We just might have a little Bart," Tom agreed.
We got to the hospital at 1:00 p.m. Later in the afternoon, I was hooked up
to a fetal heart monitor. By this time I was miserable with my contractions
coming so close and hard. It bothered Tom to see me suffer so much. He kept
praying for me that the labor would end soon. Around 1:45 Dr. Brunsman
broke my water and I was wheeled to the delivery room. On August 25th at
3:10 a.m. I gave birth to a beautiful girl.
I wanted so much to hold the tiny, dark-haired girl on my abdomen, but Dr.
Brunsman was cleaning out her nose and mouth. When he was finished doing
this, he gave her to another doctor. I saw the doctor and nurses giving her
oxygen and trying to get her to breathe.
"Why isn't she breathing?" I asked in a panic-stricken voice. "What's wrong
with our baby?"
"I don't know but she will probably start breathing soon," Tom said, gently
as he placed his hand on my shoulder.
As Tom watched the doctor and nurses, he noticed the baby was still blue
and wasn't responding so he whispered to one of the nurses, "Please baptize
her." He was scared she was dead or would die. At the time I didn't know
what he said.
After I was stitched up, I was wheeled to the recovery room. Tom had
changed back into his clothes and was with me when a doctor brought our
baby into the room. She looked so quiet and small in the incubator.
As I looked at her, a young woman doctor told us, "We are taking your baby
to Children's Hospital. She isn't breathing on her own yet, so we need to
watch her closely. Mr. Craver, we need you to sign some release forms at
Children's." She paused and then proceeded to say, "You can go to the first
floor and go where it says `Newborn Special Care-1 East.' We can tell you
more about her condition after we've had time to observe her."
The child I had carried in my womb for so many months was suddenly taken
away from me. Instead of rejoicing at the birth of my child, I felt a great
emptiness and sadness inside of me.
Before Tom left, he said, "Honey, just get some rest and don't worry.
She'll be okay. I'll come back as soon as I know more." He meant to comfort
me but I saw the anxiety in his eyes.
In the recovery room at 4:30, I decided to call my mother. I knew I would
be getting her out of bed, but I needed so much to talk to her.
When I heard her dear voice on the phone, I tearfully told her, "Mom, we
have a baby girl, but I'm so scared. She's in Children's Hospital. She was
blue and wasn't breathing at first. She still isn't breathing on her
own.... And she's so tiny." I unburdened my worse fear as I said, "I'm
afraid she's not going to live. I don't want her to die, I love her
already. I want our baby to live."
I had been in my hospital room for a couple hours when Tom walked in at
7:30 a.m. As he sat down beside me, he said, "Did you get any sleep?"
"No, I've been worrying about the baby. How is she?" I asked.
Tom then told me our baby only weighed 4 1/2 pounds, and from the X-rays it
looked like she had an enlarged heart. Also, she had a gas bubble on her
lungs, still had respiratory problems, and a possible kidney problem. The
doctor thought she had a blockage in her stomach so an operation would be
necessary.
Then Tom said, "There's something that didn't make sense to me. Dr. Hudson
[name has been changed] told me our baby's eyes aren't right. According to
her, they are slanted and she implied this was a bad sign."
"I don't remember anything different about her eyes. Did she explain what
she meant?"
"No but they looked fine to me," Tom reassured me.
Obviously Tom couldn't have questioned Dr. Hudson further about the eyes or
anything else because he was too exhausted. After being with me all night
and with the uncertainty of the baby's life, the strain had started to show
on his face.
Tom didn't tell me that she was in the critical newborn room. He wasn't
sure she would make it. So when I asked him what we should name her,
Christina Diane or Sara Theresa, he simply said, "Sara." he thought it
would be better not to name her my favorite name of Christina since she
might die.
After we decided on Sara, Tom said, "For a newborn and all she's been
through, she's really cute."
"I know. She looked cute to me even with her color so bad," I agreed.
Before Tom left to get some much needed sleep, he mentioned, "Honey, I'm
really proud of you giving Sara an unmedicated birth. I thought you might
not make it for a while, but you did terrific. If Sara would have had to
fight the influence of a drug with her respiratory problems, I doubt if she
would have lived."
I was touched by this and said, "You gave me the strength by your presence.
I couldn't have done it alone. I know it was hard on you to see me in pain,
but I'm glad you were at my side."
After a few more minutes of conversation, Tom kissed me good-bye and left
for home.
In the afternoon Tom came back to see me after he saw Sara. Before I had a
chance to ask Tom anything, he began, "Sara will definitely need an
operation. She has an intestine blockage." Then he explained what the
problem was, and what they would actually do to correct it.
"How long will she be in the hospital?"
"Anywhere from five to seven weeks. This is hard enough to accept. But
there is also a danger she could get an infection from the tube and die.
See, she will have to be fed by a tube until she is healed enough to take
milk through her mouth."
"So she could make it through the operation, and then die from an
infection. Did Dr. Hudson have anything good to say?" I asked in a
depressed voice.
"Yes, I asked her about breastfeeding Sara," Tom replied.
"Oh? What did she say?"
"She said to go ahead and pump your breasts. Sara won't be able to take
milk for a few weeks. But when she can take it, Hudson will let you know."
This was the first encouraging news Tom had given me. To know I would
actually be able to hold little Sara at my breast, and let her nurse was
something I could anticipate with eagerness.
"What caused Sara to have this blockage?" I asked.
"It could be inherited. Or the blockage could mean something else," Tom
mentioned.
I was afraid to ask this question, but yet I had to know. "What do you
mean?"
"Honey, I don't want to say this because I don't believe it. And you have
so much on your mind already, but I want to tell you instead of you hearing
it from the doctor." He hesitated and then explained, "If a child has this
particular type of blockage, has slanted eyes, and heart trouble, Down's
syndrome is usually present, too. Sara might have Down's syndrome."
"I don't understand. What's Down's syndrome?" I asked.
"I didn't know either what it meant until Dr. Hudson told me." Tom's voice
broke with the words, "It's Mongolism."
None of Sara's physical and mental difficulties seemed real to me for a few
moments after Tom's words, "It's Mongolism." I tried to focus on Tom but I
couldn't. I suddenly felt detached from my body as if I were watching a
scene from a disturbing movie. I was still staring blankly at Tom as I
softly said, "A Mongoloid."
With these words spoken, my emotions were released. I tried to fight the
tears, but it was impossible. It was too much to take without crying.
As I cried I thought how our baby's organs were not functioning properly,
she needed an operation, and she could be retarded. How could we have given
birth to such a child?
I sobbed, "We prayed to have a healthy baby and everything is so wrong with
her."
Tom attempted to console me. "Dr. Hudson didn't say it was definite, but
they are going to do a chromosome test on Sara to see if she is normal or
not. She's not sure, honey. I wouldn't have told you, but she wanted to
know if there are any children with Down's syndrome on either side. Aunt
Dorothy's youngest son, Paul, has Down's syndrome. There aren't any on your
side, are there?"
"No, not that I know of," I replied.
The next day Sara was in surgery for her intestinal blockage. After a few
hours, Dr. Cox, one of the surgeons, told me on the phone, "Your little
girl's doing fine."
I felt like a huge weight was lifted off of me. Sara had survived her
serious operation! However, she would have a minor operation on Monday to
put a tube in her neck; her calcium and protein would be fed through this
tube until her stomach healed enough to take food by mouth. Until that
operation, she would be fed sugar water through a tube in her arm. Since
what she was being fed through her arm wasn't enough to grow on, but just
the amount she needed to live, Tom and I would be more relieved when she
would receive her main nutrition.
In the weeks ahead, I found comfort in the ministry of prayer for Sara. The
greatest hope I received came from our caring relatives and friends. Almost
each person we spoke to said, "We'll pray for Sara." Also we knew of others
praying for Sara from the letters we received, and prayer chains were
started. Tom's Aunt Betty worked at a nursing home for retired nuns, and
they were all praying for Sara. Our priest, Father Jim, asked the people of
our parish to pray for her. God had blessed Tom and me with many people who
showed their love by praying for our little Sara.
As Sara fought for her life, we learned she definitely did have Down's
syndrome. Because I was only twenty-six years old, the genetic doctor felt
blood tests needed to be done on both of us. While Sara was still in the
hospital, our chromosome tests were completed. I was shattered to learn
Sara had received her extra chromosome because of my unique chromosome
pattern. As a carrier, I could have more children with Down's syndrome.
All this happened thirteen years ago. Through the power of prayer, Sara did
live. She made it through critical days with her intestinal operation. As
it turned out there were no kidney or heart problems. However, Sara does
have a hearing loss in each ear and wears a hearing aid.
She attends a regular public school, and is in a multi-handicapped class.
Whenever possible, Sara is mainstreamed.
Three years ago Sara made her First Communion, and all of us were so proud
of her. She is a very spiritual person and always starts the prayers at
mealtimes.
Being a carrier did not stop us from having siblings for Sara. In 1978,
Christina Diane was born, and in 1981, April Marie was born. In August,
1984, we finally had our son, Bartholomew Thomas. Then in September, 1987,
we had our fifth child, Emily Catherine. These children were not born with
Down's syndrome. Our sixth child, Amanda, was born in January, 1990, with
Down's syndrome, but she was much stronger than Sara and off to a better
start. Since we know abortion is wrong, I have never had an amniocentesis
test during any pregnancy to see if the unborn baby had Down's syndrome.
Even though we know Sara does have limitations, we know our love for her
and her love for others has no limitations. People have said Sara is lucky
to have us as her parents, but it is the other way around. We are blessed
by her life. When she was born and Tom thought she could be dead, he said
that her precious soul went to the Lord to meet Him. The Lord said to Sara,
"Your time to die is not now. You have a Mommy and a Daddy who need you so
much to show them what really matters in life. You must return to them and
inspire everyone to love as only you can."
And this is exactly what Sara does each day of her life.
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