“I knew at that moment that one of the truly dearest sounds on earth was a baby’s cry.”
Susanna Flyger, Trisomy 18, 02/18/1999 to 03/13/1999, Freeman, SD
It’s been sixteen years today since our Susanna was born. She was the sixth child and her older brother who was four was very excited at the prospect of having another sibling. None of the other children were terribly excited. I think they were wondering if it would be a boy or a girl and who would eventually have to share a bed. We had no indication there was any problems though. Mrs. all through the pregnancy said there was “Something not quite right” about this pregnancy.
On the morning of Feb. 18, my wife wakened and told me she thought this would be the day. We waited until the doctor’s office opened as she had a checkup scheduled for that morning. We went into the doctor but were sent home. Later that evening, we returned to town to the hospital, leaving the children at home. Our oldest was 16 and so the children were left to finish doing chores and get ready for bed on their own.
Our baby came quite soon after we got to the hospital. I remember thinking when she came that there was so much more amniotic fluid than I had remembered with our older five children. She was so small and blue. I feared she was dead as she didn’t cry. The doctor quickly worked on her, telling the nurse to give the baby O2 and calling for another doctor to come right away. Things happened very fast but this poor tiny helpless baby began to take on some color. She was so thin and I immediately noticed those funny little fingers. Her fist tight with her fingers crossed over in a way that I found impossible to duplicate with my own fingers. But she never cried.
My wife and I were fairly forgotten in the flurry of the following minutes. My wife was wheeled to a different room across the hall and a helicopter was summoned from Sioux Falls, fifty miles away. I asked the doctor what was wrong. He said he could hear a heart murmur and that baby was having trouble breathing on her own. We were left in the room across the hall, wondering. I went down the hall to call my mother and hers, as well as our prayer chain at church.
Presently we heard the chopper land in the parking lot across the street from our small town hospital. The crew rushed in and took over. They made some observations and then one of the crew came in the room to talk to us. He informed us he believed that our child might have a condition known as Edward’s Syndrome and that such children usually died soon after birth. They took her and as we heard the helicopter fly away, we were left all alone.
With our other babies the nurses would pop in and out, bring the baby around for all to hold and coo over, this wasn’t happening. We just sat there and cried. I knelt by my wife’s bed and prayed, “Oh , Lord, Why us?” It was then I believe the Lord spoke to my heart as suddenly it was He said, “And why not you?”
We cried and prayed until about five AM. I then had to go home to milk the cows and change. I called my mother to see if she’d stop in to check the kids that day as I would be off to Sioux Falls to see the baby. When I got back to the hospital at about seven AM there stood my wife at the door. I was surprised. “They don’t know what to do with me, so they told me I can go,” she said. I was taken back. This was a different experience for all. Instead the elation of a new baby and taking mother and child home, there was an oppressive silence. No one knew what to do or say.
We stopped in town to pick up my wife’s mother and we started for Sioux Falls. It was a bright, sunny, winter day. When we got to Sioux Falls, we came to stop at a busy intersection. While I waited for the light to turn, I looked in the car across the way and people were laughing. I looked at the other cars and everyone was smiling and seemed to be laughing. I cried out to God, “Oh Lord, here it’s a bright and sunny day and all these people are happy and laughing and our hearts are breaking.” Suddenly the Spirit of God seemed to say to me, “And how often have you been the person in the other car?”
We got to the hospital and in the neonatal unit we found our tiny girl hooked up to all kinds of hoses and equipment. A doctor came and spoke to us. He told us he believed she had Trisomy 18 but they would like to do a chromosome test to make sure. He told me that a heart doctor had seen her and she had only three chambers to her heart. He told us that if she was a child with Edward’s Syndrome that most such children don’t make it to term and that most of those who do die shortly after birth. He said that a doctor who was a geneticist would be coming to talk to us. She eventually came and took us to a room. She explained much as he did that we should not expect her to live more than a few days, no doubt not more than a month. She had in her hand a small pamphlet about Trisomy 18 and a several old copies of a magazine that said, SOFT on the cover. I flipped through it quickly and saw pictures of what I thought were hideously deformed children. Not beautiful little angels like our Susanna. I closed the cover and refused to look farther.
We went home to do chores and be with our children who were quietly suffering at home without Mom and Dad. We were at the lowest point in our lives. The next morning after chores we again went to town. We were met by a different doctor this day. This neonatologist introduced himself. We stood and helplessly stared at our baby. He asked if we’d like to hold her and we told him we would. We tried but it was so hard with her hooked up to ventilator and all the tubes and hoses.
I then asked him if we took her off the machine if we were killing her. He replied, “You know, she’s going to die anyway and I wonder if she wouldn’t be more comfortable if you took her off. Besides, ” he added, “You know where she’s going.”
I looked at him and said, “Yes, I believe with all my heart I know where she’s going.” He smiled and said he’d like to pray for us. He knelt right there in the ICU and prayed for us. It was as if God had sent this doctor for us.
The report came to confirm she had Trisomy 18. They unhooked her from the machines then handed my wife our wee daughter who we had never really been held. She was so small & wrinkled and I wished I could once hear her cry. I knew at that moment that one of the truly dearest sounds on earth was a baby’s cry.
They gave us a room like a motel room where we could be alone with her. The nurse asked if we needed anything and we told her no, thank you. I called my folks and asked them to bring the kids to town to see their sister as they’d not seen her and we wanted them to see her alive. My mom brought them all but the youngest. I was distressed and asked where he was. She informed me he’d stayed home with Grandpa as she thought he was too small to go through this. I said, “No, he has to be here. He wanted her so badly.” So, we called my dad and an hour later he showed up with Jared. He was so elated at seeing his baby sister. “Is this my baby?” he asked excitedly. “Yes,” we said with a catch in our voice and tears in our eyes. We took a couple snapshots of the kids holding her. We look at them and see the sad faces of the four older children and the bright beaming face of a four year old boy holding “His baby.”
The children left and we took turns holding her. A nurse came in and asked if we thought we should have the baby baptized. I spoke and said, no thank you as that was not part of our tradition. We believe that babies are under God’s love and grace and will be in heaven no matter what. The doctor then said he’d leave us alone and we should just mark the time when she passed so they’d know.
That entire night we held her, cried and sang precious hymn after hymn. All the songs of faith we’d learned growing up. She stopped breathing, and turned blue. We were sure she was gone, but she gasped and pinked up again. Morning came and the doctor peeked in. He seemed amazed. “I wouldn’t have given you anything she’d still been alive” he said. I told him about her apnea spell. “How many times will we have to go through this?” I asked. He informed me he didn’t know, days, maybe weeks, not more. Eventually, he told us, her little heart would just give out. I then asked if we could take her home. The nurse’s jaw dropped and I asked her what was wrong. She assured me nothing, but she was surprised we wanted to take her home. I informed her this was no place to live or die and we had five kids at home that needed us. She then informed me she thought that was wonderful and she started to cry. She then said there was a wee boy who was like our Susanna. He was there in the hospital three years before he died and no one had ever come to see him. I told the nurse I understood. No doubt those young parents thought that they could avoid the pain if they didn’t see him. I understood but yet I couldn’t. We didn’t ask for this, but yet God had permitted it to happen for a reason.
The doctor said they’d try to work things out so we could take her home. They mentioned that without an IV she’d need an ng tube and they’d want to see how well she took to it. A blizzard was coming so Mrs. and I left her to go home and do chores. While there, we were uneasy that she might die and we wouldn’t be there but our youngest son was coming down with a severe cold. It was decided she’d stay home and I ran back to Sioux Falls about midnight. I did get shut in by the blizzard at the hospital. I held her and held her, never putting her down.
My wife’s brother stopped up to see us and I got a call on the phone from a lady in our community who’s known to be quite eccentric. I wondered why she was calling, but what she had to say came to me so much to us. “I’m praying she will live long enough for all of you to love and all of you to hold,” she said.
That next day, I went home to get my wife and we quickly returned to town. We took the wee baby home. They didn’t require we put her in a car seat like they had with our other children. After all, she was going to die.
We got her home and the days went by. We had a lovely home nurse who stopped in to check on her. Our family physician even paid a house call to check on her and pray with us. Various neighbors came who’d never come before. Some brought food. I reasoned that many were coming just to stare at our “deformed” child. My school principal came with much appreciated groceries from the staff at school. “Oh Dan,” she said. “She’s not awful, she’s beautiful” she blurted out and then I could see she was embarrassed. “She is beautiful” I said. All who saw her marveled at how she seemed to look them right in the face and her eyes seemed to search your soul. Some commented how she was like looking into the face of an angel. She truly was. One night she even smiled at us. When our physician came, I told her this, and he laughed, saying she was too young to smile, and then at that very moment he looked at her and smiled at him. He said, “She does smile!”
We believe God gave us this since we were to have her for such a short time. She upon occasion had apnea spells but she would come out of it. As the days went by they became more frequent. I eventually went back to school. On March 12 , I felt I should stay home. That day I held her most of the day. Supper time came and my wife said, “You know , we never took a picture of her wearing a dress.” Our dear friends from the other side of the state had given her a sweet little dress. We dressed her in it and took her picture. She smiled for the camera. We had a little white dress that looked like a wedding gown. It was brought to us by a friend who lived in another county.
My wife had a dream that this lady had made a little white dress like a wedding dress for Susanna and that we buried her in it. One night this lady called. A snowstorm was starting. She said, “Dan, I need to come up, is it OK?” I told her it was snowing but she insisted she needed to come. I hung up and told my wife who was on the phone. She gave me a funny look. About an hour later she arrived with her teenaged daughter. The girl was carrying a pan of rolls and she had a bag. They visited briefly then she took the bag. (We knew what was in it before she pulled it out) She explained she’d sewn this little dress and she brought it out and it was a long white satin gown. It was beautiful and she explained how the little pink and blue bows represented her siblings, and the little pearls her parents; We were dumbstruck. We thanked her but she later said we were like robots and then we were later able to tell her why because of the dream.
Anyway, when she left we knew, the time was not long. That night of March 12, after dressing her in one dress I asked if we should dress her in the white one. My wife reluctantly agreed and while I held her she stopped breathing. She had the longest apnea spell she’d ever had. We cried, we hollered, we jostled her to make her breathe. My wife cried, “I knew if we dressed her in that dress this would happen.” I took the dress off and she started breathing.
That night I had her sleep beside me in bed. My wife had gone in our little boy’s room to sleep on the floor as he was so sick and kept crying for her. About 3 AM I heard a cry. An actual cry! But it was a different cry. This was like the squeal of an older baby like when they’re excited to see you . I opened my eyes and she had both arms uplifted like an older child does when they want to be picked up. I was terribly tired and groggy. I said, “Shhh, it’s not feeding time honey.” I laid my hand on her chest and dozed for about fifteen minutes. I suddenly wakened and felt her. I sat bolt upright and noticed she was gone. I held her for half an hour before calling my wife. I realized that when she squealed and put her little arms up was when Jesus had come for her.
I called my wife and she came in and held her. We waited and waited for morning to come. We washed her and dressed her in the white dress and put her in her basinet. She looked like a doll.
About five AM I called my mom and my wife’s. My wife’s mother came out about six. I went out to do chores, then called the doctor and drove to Viborg to get a coffin. I called dad to meet me at the cemetery. It had snowed four or five inches in the night but there was no wind which was very unusual. I got to the graveyard and Daddy had dug a path from the gate back to where we would dig the grave. He and I worked in silence, chiseling out the frozen ground. I went home with the little coffin and took her and put her in it. She looked like a doll in a box.
My mom had called my sister and my wife’s mom called her siblings. We told no one else. We all agreed to meet at the graveyard at 2 PM. We read some scripture and prayed. Her uncles put the coffin in the little hole and we covered her up. My 86 year old grandfather stood there crying and I went over and put my arm around his frail shoulders. “How many times have you stood here like this?” I asked. “I’ve stood in this cemetery more times than any man alive,” he said. Here his parents, his grandparents, and great grandparents on both sides were buried along with aunts, uncles, cousins. “But this is the worst time ever,” he sobbed.
We quietly went back to our car and drove home in numb silence. We thought we’d been through the worst, but that night was the worst of all. The days that followed we mechanically seemed to get through. When she was alive, people were stopping in. Folks who’d never been on our yard before. Now, no one came. One day, a lady we barely knew from church showed up. “I don’t know why I’m here,” she said. “God told me to come.” We thanked her and it meant a lot that God had told her to come. A confirmation to us we’d not been forgotten.
Days became weeks, weeks, months. My wife was expecting again. This time they were wary. They did ultrasounds and other tests. They wanted to do an amnio as every test they’d taken showed we would have a trisomy child. The phone rang one morning and the doctor told me a specialist in Sioux Falls had looked at all the tests and called him to tell us to tell those people to get in there right away. He asked why, and she told him, “So they can terminate the pregnancy, they don’t need to go to hell again.” Our doctor told her it wasn’t an option. He then said, “Dan, maybe I spoke out of turn.” I assured him that no, he had conveyed our wishes and we’d be doing no more tests. We knew nothing of a problem when Susanna was born and it was better we hadn’t .
The day came for our baby to be born. The doctor expecting trouble, called a second physician to be on hand this time. Our bouncing baby girl was born on Jan 22. Roe vs. Wade day. The child the “specialist” wanted us to terminate is a bright and talented young lady of 15, just 11 months younger than her sister who’s in heaven.
We all got to love her and hold her, our dear Susanna. We go to the cemetery and think some day, we will no doubt be laid beside her under the sod, but when that happens, we will really be with her in heaven. We’ve a home in heaven and a dear one waiting for us. A poem we’d read on a plaque hanging in the ICU neonatal came to mean so much to us , that poem that says, “I’ll lend you for a little while a child of mine He said, . . ” We feel as if we entertained an angel. We wouldn’t wish our experience on our worst enemy nor would we trade it for all the tea in China.
Oh, and those SOFT magazines the doctor tossed at us. Those stories came to be very precious and let us know that we were not alone and each story became very precious.