Hi,
I would like to introduce you to our precious angel's story. Our youngest daughter, Rose Marie Sours was born on November 18, 1999, and died an hour and twenty-one minutes after she was born in Richmond, Virginia of complications arising from Trisomy 13 with severe holoprosencephally, but I'm getting ahead of myself.

In mid-April, 1999, when my youngest child was only 13 months old, we got the exciting news that our family was once again growing. I was going to have another little one! Everything seemed perfect during the start of the pregnancy, I felt healthy, and had no problem with morning sickness this time.

My mom screamed and dropped the phone when I told her we were expecting again. She was worried about me, because I had a teenager with a lot of problems, and two young children, ages 1 and 2. I was in my mid to late thirties and all my children had been delivered by C-Section. She thought it was too soon to have another, and was worried about my age.

At the start of August I went in to the doctor's office to have my first ultrasound. We were SO excited to have the chance to see our baby. We hoped to see whether our baby was going to be a boy or a girl. Our baby didn't cooperate with the ultrasound technician when she tried to find out the gender for us. She also didn't cooperate when the tech tried to get pictures of her heart for diagnostics. I had refused the screening tests because I had heard about too many false positives and didn't want to worry without cause, so they doctor needed the ultrasound pictures to check for problems.

The technician said something about the size of her head. She said that her head measured smaller than her gestational age, and questioned whether or not my dates were accurate. I was told that I would need to come back for another ultrasound a week later.

When I went back, the technician tried again to get pictures of her heart, or learn her gender. Again she was too active. She wouldn't stay still long enough to get a picture or a good view. I was then told that we would need to go to the perinatal center for a level 2 ultrasound. I had no clue that there might be a problem.

On August 30 (my husband's birthday), we went to the perinatal center for the ultrasound. We couldn't wait to see her. They took many more pictures than they did at my doctor's office. They did a lot of measuring. They called in the perinatalogist to look at the ultrasound pictures and see what other angles they should try. They still couldn't get a picture of her heart. They thought she might be a girl, but she didn't stay still long enough to be sure. By the end of the visit, I suspected that there might be a problem, because they were talking in very hushed voices, but my conscious mind didn't let me acknowledge the possibility.

After the ultrasound was done, the perinatalogist called us into her office to talk about the findings. She showed us the pictures from the ultrasound and dropped a bomb. Our baby had a lot of markers that indicated the probability of a Trisomy disorder, either 13 or 18. First, she had 6 fingers on each hand and six toes on each foot. ("So what" I thought) her head was proportionally much smaller than it should be compared to her body. ("And this is a problem because..." I thought) She had holoprosencephally ("What in the world is that?" I wondered) As if she had read my thoughts she explained that our daughter's brain hadn't separated into lobes. This would cause severe mental retardation, and probable blindness and/or deafness. Her eyes were set extremely close together and my not have separated at all. She would probably be born with only one eye, cyclopia. She had a large proboscus on her head that was where her nose should be. Then she said that her kidneys appeared to be normal, and there was no sign of a cleft lip or pallette. They also couldn't get a picture of her heart, so they weren't aware what if any heart problems she might have.

By the time she finished telling us everything terrible that was happening or could happen to our child we were numb. How could that be?! Wouldn't we know if something was that wrong?!

Then she told us that she couldn't make us do anything, but she thought that the only choice we had was to "terminate" the pregnancy immediately. When she made that recommendation, she stressed how poor the quality of life would be for our child. She wouldn't even know who you are she told us. She wouldn't want to be born that way. She had a lot of arguments to try to persuade us to abort our precious child. Then she asked if we had any questions. I asked her if my life would be in danger, and she said no. That was the deciding factor for me. I would not and could not make the decision to end this angel's life. I can't make the choice for anyone else, but for me the only choice was to carry her to term and give her every chance to live.

We agreed to an amniocentesis to find out what her condition really was. We felt that forewarned was forearmed. We wanted to know everything we could about her condition. We searched the internet for anything we could find on the subject of trisomy.

That night when we got home, I got a message from my mom on our answering machine. She was finally excited about this pregnancy and couldn't wait to meet her new grandchild. I called her back and gave her the sad news as gently as I could. She had finally accepted my pregnancy only to find out that her grandchild had trisomy. She agreed with the perinatalogist, as did many other people she knew. My cousins husband, an OB/GYN,  told me that he felt we should terminate. That surprised me because he was so pro-life. He said that in his practice, if a patient refuses to terminate a trisomy 13 or 18 pregnancy, they will ask that patient to get another doctor. They won't continue to treat them.

I was shocked at the pressure that so many people were giving me to end this pregnancy, but for me and my husband, that was not an option. I also learned that our decision to go to term with this pregnancy was an inspiration to many people around us. Our daughter was touching many lives.

I was very happy with my own OB/GYN. He and his partners were fully supportive of us in our decision to continue the pregnancy. He gave us no pressure in any way, and didn't even suggest that we might be making a mistake. He said the choice was ours, and ours alone. He told us not to let anyone pressure us to do something we didn't want to do.

The rest of the pregnancy was not as uneventful as the start. I had some health issues come up, starting with gestational diabetes, and finally culminating with severe polyhydramnios. On November 18, 1999, at 5 AM I went to the hospital with a slow leak of amniotic fluid. There was so much amniotic fluid, that the amniotic sac had to tear to let some out. (By that time I was claustrophobic just being inside my own skin) I had a fungal rash all over my abdomen that anti-fungals had not been able to get rid of, so the doctor had to call in an infectious disease specialist before they could deliver Rose to see if it would be safe to do a C-Section. When they finally decided that it would be ok, we went into the operating room.

Knowing that Rose's life would not be very long, we had made arrangements to have Rose get a special blessing in the delivery room. A friend of our family came in to give her a name and a blessing.

From the time Rose Marie Sours came into the world, to the time she went home to Heaven, she was loved and held by family and friends. My mom flew into Richmond from Chicago, and my dad and step-mother also flew in from Chicago. My teenage daughter, Elizabeth, held her as did my 20 month old daughter, Grace. My 30 month old son, Ned, didn't hold her because he was afraid he would break her.

After Rose died, I thought about her short life. I thought about how happy it was that she was held and loved totally, her whole life. How many of us have felt loved our whole lives? I know I haven't, and I know that Rose knew she was loved. She seemed so peaceful the short time we had her, and our lives have never, and will never be the same. She touched us in a way that no other human being could have.

Thanks to finding SOFT, my children learned at a very young age to associate butterflies and rainbows with their baby sister. Every time they see a rainbow, or a butterfly flies close to them they get excited, and say "Mom, Rose is saying hi".

Rose did have 6 fingers on each hand and 6 toes on each foot. She was cyclopic. Her one eye was situated just below her proboscus. Some people who see her picture wince. My children look at her picture with a love unlike any I have seen other places.

We only had her a short time here on earth, but we believe that we will have her again in the eternities when we go to heaven and join her. She went ahead to prepare the way for us. Although she was physically here only a short time, she is still with us in our hearts and will always be. I am grateful to have been blessed by having her for any amount of time. She changed me and my life, for the better.

The perinatalogist said that her condition was "not compatible with life". Her condition helped my family learn more about life and how to live it.

Thanks for letting my share the story of my precious angel, Rose

Karen  KSours6666@aol.com


Rose with her dad,
Kenneth

Rose with her mom,
Karen

Rose with her oldest sister,
Elizabeth