Missing Simon

Diagnosis: Trisomy 18

By Simon Andrew's Mom

No one ever told me that a happy life can change so quickly. This all started last January, when my husband and I discovered we were expecting our third baby, who would be born in July. I was so excited! I was sick, tired, and achy, as usual.

On January 15th of 2005, I woke up to a mess of blood, and to what i thought was the worst day of my life. I had lost a baby, and they couldn't give me a reason. I had a D & C, and returned to the saddest home that I could imagine. Everyone knew we were expecting, and we had to tell them that we'd lost the baby. I cried for weeks, and it felt like the sadness would last a lifetime.

It didn't take long for me to get pregnant again. I knew my chances of miscarriage were 1 in 4, this time. I kept thinking that I had lost one baby, so I couldn't lose another. I wasn't that unlucky. This pregnancy went really well - I didn't get sick every morning, and I barely felt pregnant most of the time. I was loving the feeling of it all.

Unfortunately, I had a feeling that something wasn't right. Call it mother's intuition. I just couldn't shake this feeling. About two months into the pregnancy, I woke up to a little spotting. My hormone levels were checked in the emergency room, and they did an ultrasound. I was so relieved when they found a heartbeat! The hospital told me that I should come back within 48 hours for bloodwork, to ensure that my hormone levels were going up correctly. It was the longest 48 hours of my life. When the second test came back, my levels had dropped. However, the tests over the next few days showed that the hormones were increasing correctly. After I passed the three-month mark, I decided that my job was to sit back and enjoy this pregnancy. This was the first time I ever enjoyed being pregnant.

I had my triple screen test done - four times! The lab made a mistake with the first test, the second test was inconclusive, the third test was not good, and the fourth was definitive - there was a problem with this pregnancy.

I had an amnio to confirm the problems and get some answers. The amnio showed us that we were expecting our first baby boy, but it also showed that the baby had Trisomy 18. His brain hadn't formed correctly, he had scoliosis as well as spina bifida, he was missing bones, he had malformed fingers, a deformed stomach, club feet, and a whole list of other problems that would leave him completely helpless and in pain. The doctors told us that if he should survive past birth, he would need endless surgeries to be able to live. From the moment he was born, he would be in an operating room, and there was no guarantee that he would pull through.

I had always told my husband if anything like this were to happen, we would have to spare our child from pain. We chose to spare our child from a lifetime of suffering.

My surgery was not without event. I bled for over 8 hours, and had a second surgery that evening, as well as two blood transfusions. I almost lost my family that day, and my husband almost lost his wife with his little boy. We made arrangements through a local funeral home, with the help of a lovely social worker. We named our son Simon Andrew, and he was born to heaven on September 14th 2005. He would have been due on the day we lost our other baby.

We had Simon cremated, and he remains in our home as our littlest baby and our biggest love. I sit here at my computer less than a week later, feeling a little stronger but a whole lot heartbroken. I will never know what Simon would have looked like. I will never know what color his eyes were. I do know that his feet were the size of my thumb, and that his parents miss him every minute. I can't tell you when this hurt will let up, or when the tears will stop, but I can tell you that to come home to a family that loves you and needs you more that anything feels pretty good. My bruises will fade. I will go on with my family. I will try again, because that's what women do.

If you are reading this and are facing a similar situation, we are here for you. You are never alone. You are choosing a better life for your little one than what is in store. And you will survive. It just takes time.


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