31 for 21 - Our Beginning

The story of Emma Sage
Conceived one year to the day of our miscarriage, Emma Sage is our fifth child. Before that moment, I never fully understood the power of ones soul. It was a warm August night and the moon was full. Suddenly, I arose from a deep sleep, overcome by the most incredible sensation. As I, succumbed to a feeling of total peace, her tiny soul entered my body. I knew immediately that I was pregnant. I placed my hands just over my uterus and asked God for this baby to stay, as I looked up at the stars dancing in the moonlight through our skylight thinking about what just happened.

About ten days later, a home pregnancy test confirmed my belief. There would be three more tests, just to be sure. After losing our last child, I was anxious and just a bit nervous, so I asked my midwife to check my HCG levels. A result consistent with the current stage of pregnancy calmed those fears.

It was about this time I began dreaming about a perfect little girl who resembled a china doll. She was so beautiful. Subsequent dreams included a labor and delivery on the side of the road. It would be a reoccurring theme, a series of dreams, where her labor and birth happened everywhere. My sister, a labor and delivery nurse brought me a cord clamp and told me to keep it with me, just in case there was a need, as she laughed about all of my stories.

We had no idea that clamp would be used.

We took a family vacation to Florida at about eight weeks. It was during this trip that another powerful sensation overcame me. As we waited for the Blues Brothers to begin their show, I watched a little boy dancing around. He would come up to us, smile, and then dance his way back to his parents. During the show, I could not keep my eyes off him. I looked at Rick and told him that our little one would like just like him. He had a little bit of something extra on his twenty-first pair , by way of Down syndrome. Rick put his arm around me and said, “That would be just fine”. I shared this story later with my sister , and then forgot about it.

At my thirteen-week visit, I was measuring big, so I asked my midwife if I could have an ultrasound to rule out twins, Rick agreed. I was actually still so nervous about the pregnancy that I wanted a little peek at our little one. I did not know then that this would actually be one of the worst experiences in my lifetime. As the process began, the technician was cold and seemed rather unconcerned about my comfort. During the middle of the scan, she announced, “There is something wrong with this baby” and then immediately called my midwife. I remember hearing her say, “I think we have a problem”.

Instead of having a little peek, relieving me of some stress and reassuring me this woman sent us on our way feeling scared and confused. We left there headed straight for our midwife Peggy’s office. She told us that the baby’s nuchual translucency measurement, the thickness of the skin on the neck, was abnormal. Our baby was measuring at 3.6 mm and anything over 3.5 is considered a soft marker for Down syndrome.

It was a difficult day.

Later that night Rick and I sat outside in the garage on his motorcycle and talked. I was just so scared not knowing what the future held. At one point, I asked, “what are we going to do?” His response “we are having a baby, we are not God, nor should we ever play God”. Oh how I love this man, not only is he my best friend, he also provides strength and support. An amniocentesis was not an option we did not want one. We did schedule a level II ultrasound for nineteen weeks gestation at a hospital near us.

It was the beginning of my quest to find out everything that I could about nuchual translucency, soft markers, and Down syndrome.

The time between that day and the scan at nineteen weeks proved to be an enlightening. Everyone who asked me about my pregnancy heard about the possibility that the baby might have Down syndrome and the responses I got amazed me. Some would say things like “you will be truly blessed” other would say, “What are you going to do”, but the responses that were most difficult included “Your not going to have it are you?”

We gathered the children to discuss the upcoming ultrasound and the “choices” people make based on its results. My oldest daughter Greta looked at me and said:

“So mom, if parents had a crystal ball [like the ultrasound machine] and found out that the baby they were carrying was perfect and when that baby was five it was in a horrible accident and became disabled and that they had to take care of that child for the rest of their lives, could those parents choose to terminate that baby just because they didn’t want to deal with it later on?”

Emma Sage’s tiny little soul was already teaching those around her about the true meaning of life, even before she entered the world.

My sister came with me for the level II ultrasound. She was experienced in this department, and I wanted her with so that she could keep her eyes on the scan—focusing on the baby’s heart and other major organs. The baby was free of any structural defects and the nuchual translucency was no longer an issue. There was a concern about a slightly abnormal pyelectusis. This changed my risk/ratio from 1/47 to 1/280. There would be another scan at twenty-eight weeks. The baby had no soft markers for Down syndrome at that time, but I knew in my heart already that she would be born with that extra little chromosome.

I celebrated this pregnancy. I shared the joy with everyone. The possibility of Trisomy 21 didn’t matter.

This was our baby, our perfect, beautiful baby.

My dreams continued to intensify. At least once a week I had dreamt of the baby’s unexpected birth and my sister always laughed at my stories about the unusual places the baby was born. I kept the cord clamp with me, as I kept dreaming of an angel—that I thought might have been the baby we lost reassuring me everything was going to be fine.

On my due date, I checked out “Babies with Down Syndrome” from our local library, along with a bunch of books about gardening. When my mother in law saw it she looked at me and said, “you’re not going to need this book”, I just smiled and said, “I know, it’s just in case”.

On Tuesday May 8, three days after she was due, I was helping my daughter with a science project. When it was complete, everyone headed to bed early, as Rick had to leave by 3:00 a.m. I was having a bout of indigestion, and headed down stairs to take a warm bath. After the bath, I felt better and went out to the recliner, and fell asleep. About an hour later, I woke up in pain, and took another bath. This happened three times. The next time I woke up, it was 1:00 a.m. and I thought I might have been having contractions about fifteen minutes apart. I called my sister and told her what was going on; by this time, I was in a great deal of pain. She told me to call my midwife and she would get dressed and meet me at the hospital.

I left a message for the midwife at about 1:25 a.m. and waited for her call. During this time, the contractions seemed to be coming in waves, never really ending, just continuing. When she called back, the phone woke up Rick. He jumped out of bed and dressed because he knew something was going on. I told her I was not sure that this was the start of labor, and that I felt so weird. I thought it might be possible that she would check me and send me back home, but we agreed to meet at the hospital anyway. We woke up the children and I began dressing Otto. That was when a contraction that really scared me hit. I managed to get him dressed and then began dressing myself.

As I began pulling up my overalls, I got another contraction that hit me like a ton of bricks.

I remember thinking that if this was only the beginning of labor I was not going to be able to handle what happened next. I walked down the stairs as Rick and the children were already on their way out the door. Just before I reached the bottom, I had a strong sensation to go to the bathroom. I yelled for Rick, just as I realized this baby was well on its way, and I began pulling off my clothes. “Where do I go?” I ask Rick. I thought maybe the living room or back up to bed, but Rick told me to get into the bathtub, as he throws in a bunch of clean clothes while calling 911.

I listened as he asks the children “Kids, quick, what is our address again”, it had changed from a rural route just a few years back and he couldn’t remember the new one.

All those dreams, they had a meaning, they were my preparation for Emma Sage’s birth. I didn’t know where she would arrive, but I knew it was just going to be us, and that we weren’t going to be at the hospital. Rick helped me deliver her, surrounded by our children. As I raised her to my chest, I looked at Rick and said, “Oh look honey, she does have Down syndrome!”

Her birthplace was not only unexpected, it also shared an amazing coincidence. Rick’s grandfather died, sitting on a closed toilet in this very space. It was a gateway for souls enter and leave this worldly place. To honor her great grandfather Alexander, Emma Sage was given a third name—Alexandra.

Her birth was peaceful and joyous, not overrun with medical intervention or invasion. We welcomed her into this world alone, as a family.

When the emergency team arrived the loaded us into the ambulance, and we were off to the hospital. When we arrived, my sister and midwife were there to greet me. My midwife looked at me, smiling and said, “If it is nothing you can send me home”. We laughed aloud as Emma Sage had arrived just fourteen minutes after we talked about whether or not I was in labor.

Most newborn babies go to the nursery, but not our Emma Sage. Because she was born outside of the hospital, she was considered a dirty baby and had to stay with us. I would have had it no other way, because most children with Down syndrome are quickly whisked away from their parents for precautionary medical intervention—not our Emma Sage.

We all laugh to this day about the dirty baby who was born in a bathtub. I knew right away she had Down syndrome and my midwife and sister agreed. Many doctors came to peek at her. Hypotonia made her little body weak and unable to maintain her temperature, so the brought in a warmer for us. She was a quiet sleepy little one.

I tried nursing her but she was unable to latch on. I began pumping right away, as I didn’t want them to supplement with formula. I was going to breastfeed her, as I did all of her siblings, for as long as she wanted to. Those first feedings included a syringe, until she was able to latch, but once she figured it out, she nursed like a champion.

So many other unexpected things have happened since the birth of Emma Sage, so many subtle reminders about the true meaning of life.

Emma: The one who heals.

Sage: One with great wisdom.

Emma Sage, a name that she has lived up to since the before she was born.