Ruth Ann High
March 25, 2004 - January 16, 2005

Charlottesville, Virginia (VA) - Full Trisomy 13

Parents: Rebecca Garson and Joseph B. High III
Charlottesville, Virginia
mabeccacws@planetcomm.net
http://babiesonline.com/babies/r/ruthann

The thirteenth year of our relationship Joe and I were thoroughly surprised to find out we were expecting a child. From the very beginning of our relationship we had a clear understanding that children were not going to be part of our future. Joe and I both had children from previous relationships. I was a kindergarten teacher, and I felt like the children that I taught were "my kids". Joe felt very strongly about trying to prevent overpopulation.

So imagine the shock we experienced! Gradually I grew accustomed to the concept of total life change and I began to enjoy my pregnancy. I planned on having a home birth in our cabin in the woods. Joe and I live in a small house without running water or electricity. The midwives supported me through my pregnancy, leaving me to decide what tests I would have. I chose to not have any ultrasounds or amniocentesis, because the results would not change my decision to have the baby.

The day of my due date I went into labor. My water broke and gradually leaked out over the next two days. On Thursday morning the midwives asked me to come in to be checked out since the labor was not progressing. Up until that point they were fairly sure that the baby was head down. That morning they realized that the baby was breech. They sent us to the hospital for an ultrasound to confirm their suspicions. That afternoon the doctors at the hospital met me for the first time. They were not happy about treating a pregnant lady whom they had not seen throughout the pregnancy. ButŠUVa is a federally funded teaching hospital, and they had no choice!

Confidant that I would have the ultrasound and be sent home, I laid down on the table to see a computer image of my baby for the first time. The doctor announced, "Yep, the baby is breech. We will go ahead and schedule you for a c-section for 6pm tonight." I was horrified. I was so much looking forward to attempting a VBAC (my 18 year old had been born by cesarean.) However, the bottom line was that I wanted what was best for the baby. My midwives, friends and family came to the hospital to wait with me while the doctors prepared for surgery.
At 8:24pm my beautiful daughter, Ruth Ann, was pulled from my womb. Her cries sounded like a little kitten mewing. The pediatric team then gently told me that she was having difficulties. They also told me that it might be hard for me to see her. Ruth was born with a severe cleft lip and palate. She had an omphalocele. She had extra digits on the sides of her pinkies. She was holding her thumbs on the insides of her fists. And, she was having difficulty breathing. They brought her to meŠmy sweet baby! Then they whisked her away to NICU.

The doctors told us that several of her anomalies suggested Trisomy 13, but they did not want to diagnose her without the genetic testing. On Ruth's second day here the doctors repaired her omphalocele. She also had fluid around both of her lungs. I hobbled down to NICU from my hospital bed to be with her. Ruth looked like a pin cushion. She had tubes, monitors and IVs all over her body. Joe and I spent that weekend in a state of shock and exhaustion. I actually had convinced myself that she must not have had Trisomy 13. Although on one level, another part of me knew she did have the extra chromosome. On Monday evening the doctors sat with Joe, me and Joe's son Josh to tell us that Ruth did indeed have full Trisomy 13. They talked with us about what that might mean for Ruth. We were devastated.

Joe and I decided that the most important thing for Ruth was to experience as little pain as possible and for her to NOT die in the hospital. Ruth spent thirteen days in NICU. Having learned how to change her feeding tube, they sent us home. We didn't know if Ruth would survive the forty minute drive back to our house. That was one of the scariest drives I have ever made in my life.

Ruth did survive that drive. She survived for almost ten months. Joe and I were lucky enough to be able to spend all of her life with her. We both took turns caring for her. When Ruth was a little over three months old she went back to the hospital to have her lip repaired and to have a g-tube placed in her stomach. We also decided to have her extra digits removed. The surgery went well and she recovered quickly. With the g-tube in place Ruth's reflux was a little less intense.

Despite all of her challenges, Ruth was a very happy baby. She smiled for the first time on Mother's Day. That was the best gift I have ever received in my life! Ruth loved being outdoors. She was always looking up into the tree tops of the forest we live in. When we went on trips she would break into a huge grin when we got out of the car back at home. She was back in her trees!

In January Ruth caught her first and last virus. A terrible stomach flu was raging through our area. The doctors told us that many otherwise healthy adults were being hospitalized for dehydration. Late on a Friday night Ruth started having diarrhea. On Saturday she seemed a bit lethargic, but not terribly sick. Her grandma and Aunt came out to see her that day. We all went for a walk through the forest. Ruth went through several diapers and outfits that afternoon. The next morning she woke up with a fever of 105.9 degrees. We quickly called the doctor and asked for advice. After following their advice Joe took over holding her while I went out to take a shower and to get on the trisomy listserve to ask my friends for prayers. When I came home Joe was holding Ruth. He looked terribleŠI started to ask what was wrong when he said, "She is dead." Ruth had died in her daddy's arms ten minutes before I got home.

Ruth touched so many people's lives. I am still processing the ripples of energy her life created. I do not think I am capable of fully grasping that energy. We miss her so much. The sadness comes in waves that wash over us then pass by. With time the waves come farther and farther apart. Being Ruth's mother has been an incredible journey that I could never have imagined. She was such a gift.

Update March 2005:
Since Joe and I buried Ruth by ourselves without a ceremony, I had been wanting to do something with my immediate family to create
closure of sorts. I had been fantasizing about inviting my brother's kids out to plant bulbs on Ruth's birthday. Well, as her birthday came closer my idea evolved into a "birthday party".

Because I live in a 14x16 cabin without running water or electricity, I have never been able to cook for all of my family at once. My community now has a beautiful community center with a nice big kitchen... So, I decided to invite my mom, sister, and brother's family to come on Friday afternoon to celebrate Ruth. I woke up that morning bright and early. Unfortunately, Joe had caught a cold from his son, Josh, earlier that week. He was sick and depressed. I left him home in bed and headed off to Waynesboro to go grocery shopping. I cried all the way to the store. I shopped. Then I cried all the way home. I unloaded the groceries at the community center and headed home to get Ruth's unfinished
headstone.

I had been trying to finish Ruth's headstone since the week she died. It had been an entirely frustrating experience because I did not have the tools that I needed. I was carving the soapstone with my battery operated Dremel tool. The battery would die after just one letter. So, at the beginning of last week I borrowed a friends electric Dremel tool in her pottery studio. Each day I worked as long as her tool could last...That tool was also no good. It was old, and the shaft was lose. It would get through a letter or two than die. Thursday night I was walking with my next door neighbor and sharing my frustration with her. I had so much wanted to finish Ruth's stone in time for her birthday.

Well, later that evening after Joe and I were already in bed, there came a knock at the door. It was my neighbor's husband. She had called all over our community until she found another Dremel tool. Her husband was delivering it to me. So, I headed back to the electricity (and cried on the way...) I spent the next couple of hours finishing Ruth's stone. Yeah!!!!!

Then I went back home to rest a bit before it was time to get starting cooking dinner and baking Ruth's birthday cake. I sat with Joe and cried on his shoulder...about half and hour later it was off to the community center.

I baked the cake that all of my kindergarten children bring to school to celebrate their birthdays. I had never actually baked it before. My sister-in-law was shocked. It came out really well! (I think that was my first cake from scratch.) I chopped all of the broccoli, sliced the strawberries for the cake, and put the ham in the oven. I cranked the stereo while I was doing this...electronic luxury :) And, I cried off and on the whole
time.

Then around 4pm my family arrived with trowels and pansies. I had snow-drops, lily of the valley, daffodils, crocuses, hyacinths, and begonias. I also had Ruth's headstone. We all hiked up the hill to the cemetery. When Ruth was born I had wished that we could sing "I'll Fly Away" at her funeral. Well, we never had a funeral. However, when we got to the cemetery there, hanging on a branch of the little dogwood tree that stands next to her grave, was a batik banner with the words to that song. A good friend had made it and hung it up that morning. As we all planted the bulbs and flowers my brother, sister and I sang that song. (And I cried!)

When the flowers were planted and my nephews and niece had asked all of the questions that came to them, we headed back to the
community center for dinner. My first attempt at feeding my family was a success! I had set up a table with photos of Ruth and vases of daffodils. We finished dinner then brought out the birthday cake. I was lucky enough to teach all three of my brother's kids in kindergarten. There is a special song that we sing and a beautiful story that I tell to celebrate birthdays in the classroom. So, before we cut into Ruth's cake the kids and I sang the birthday song. Then my niece told the birthday story from memory for Ruth.

I couldn't have asked for a more beautiful day! My family was finally a part of saying goodbye to Ruth. I finished the headstone in time. And, I cried my heart out. Ahhhhhhhhhhhh.

Rebecca, Ruth's mom