“How many people are lucky enough to have an angel live with them for six months?”
Erin Margaret Jorgenson, 11/4/1994 – 5/4/1995, Trisomy 18, Sioux Falls, SD
On November 4, 1994 a precious little angel fluttered into our lives. Although Erin Margaret was three weeks overdue, she only weighed 5 lbs., 9 oz., and was 17 1/2 inches long. She looked like a little doll—lots of dark hair and absolutely perfect!
Erin was born by emergency c-section due to the placenta separating prematurely. Her doctors thought from the start that there could be a chromosome problem because of her low birth weight and her overlapping index fingers. But we thought they were just being overly cautious. After all, we had four healthy kids at home—why should this one be different?
At Erin’s two week check-up her test results were back: Trisomy 18! Like everyone else, we had never heard of it before. Chromosome problems were supposed to be things like Down Syndrome—something we had heard of and could deal with! And definitely not fatal!! Of course, we were given a very gloomy prognosis, so we didn’t even know if our sweet little baby would live until Christmas. We were told that 20-30% of trisomy 18 babies die in the first month, 50% by the second month, and 90% die before their first birthday. Instead of dreaming of Erin’s graduation or wedding, we had to wonder if we should be thinking about her funeral.
We started weighing Erin once a week and watched her gain weight very slowly. We own a meat processing plant, so we have very accurate scales. Every Tuesday my husband Kim would bring a small digital scale home. On the day Erin was too long to just put on the scale, and had to be put on a blanket-covered cookie sheet on the scale, we rejoiced! We found our joy in some very strange things, but these are the things I can look back on and smile. As she reached one month, and then two, our hopes soared! For the most part Erin did very well. She had sniffles a couple of times. Then at four months she started loosing weight. In four weeks she lost seven ounces. I talked to her doctor about giving her a high calorie formula from a bottle(she was usually breast fed), and in two weeks she gained eight ounces! Her all-time high weight was 6lbs., 13 1/2 oz. Her doctor also had a chest x-ray done to rule out pneumonia, and it showed her heart to be very enlarged. It was also shaped a bit different.
When Erin was almost six months old she had a slight cold and wasn’t eating very well. We took her to the doctor who gave her medicine and sent her home.
On the morning of May 4, 1995, Erin died in my arms at around 6:50 a.m. It happened so fast. I always worried that she would die during the night and I would forever wonder if I could have done something. So it was rather comforting that she was in my arms and awake when it happened. It crossed our minds to try CPR, but we knew she was gone. We knew from the chest x-ray that her heart was in bad shape. We held and said our good-byes to our little Erin for a couple hours. And Adam and Brenda held her. We think this was helpful in coping with it.
When I die I hope I go as peacefully as Erin did. It was like closing a curtain—she was there, and then suddenly she was gone.
When we were ready we called the sheriff, and he and the funeral director came to our house to get her. Since my husband had worked in law enforcement part-time for a number of years, the sheriff was a good friend of ours. When we first found out about Erin’s condition my husband talked to him and asked him what to do if she died at home. He consulted with the coroner, and they advised us to get a letter from the pediatrician stating Erin’s problem and what was expected to happen. This would avoid the need for an autopsy.
Erin’s funeral service was beautiful. A young friend of ours sang ” The Dance” by Garth Brooks, which really said everything we were feeling: if we had never had Erin we would have missed the pain of losing her, but we would have missed the beauty of having her those six months, and it was a very precious “dance”.
Adam’s and Brenda’s friends and classmates, and the school administration attended the funeral. Also all the county law enforcement—sheriff’s department, state troopers, and the game warden. It was so thoughtful—that’s the beauty of living in a small community.
Erin’s remains were cremated and although we had planned to bury them on our property, we instead put her urn in our glass case with my angel collection. As Kim said: All of our best angels are in there. We do have a memorial headstone for her, and Kim and Adam built a rock wall around that area. I’m working on a flower garden there. At Christmas we decorate the evergreen tree by her stone with white lights in Erin’s memory.
Although we didn’t get the healthy baby we planned for, Erin meant the world to us. She was so precious! We’re thankful for the time we had with her. How many people are lucky enough to have an angel live with them for six months? And it was a good six months. Erin was never really sick and could eat normally. She never knew the pain of tubes or needles. And we’re thankful she was at home in our arms when the time came for her to be passed over into God’s arms. I used to pray to God to make Erin well, but if He couldn’t make her well, to take her swiftly and painlessly when the time came. And that was the part of my prayer He chose to answer.
I learned so much from having Erin in my life, and hopefully I’m a better person because of her. I always thought Erin had such very wise eyes for such a little baby. I don’t know if I believe in reincarnation—I think it’s a very interesting concept—but if I were to believe in it I would think Erin was a very “old soul” because of the wisdom in her eyes. I also learned that you never get over the loss of a child, but after a while it hurts really bad less often. And that is the point we have finally reached.
Loved and Missed by her parents, Kim and Gloria, and siblings, Loren, 38; Adam, 37; Brenda, 33; Ashlyn, 21.
*Ashlyn wrote the following poem in memory of her baby sister Erin, whom she was just old enough to remember:
Erin, An Angel
Erin was my little sis,
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