I Want Our Baby To Live
"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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