Category: Trisomy 13 (Patau syndrome)

Opinion

Stand up!

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Please stand up

Bethany spoke at a Stop the Abortion Ban rally. This is what she had to say. by Bethany My name is Bethany, and I am here today because I am sick of being dehumanized. I am sick of my lived experiences being judged. I am sick of my body and my choices being exploited so that extreme Republicans can gather votes and money. The reasons people have abortions are varied. There are no right or wrong reasons. We need to stop allowing lawmakers to sit in judgment of the reasons we have for the choices we make for ourselves, our bodies, and our families. Stop the […]

Induction/L&D

Left With So Many Questions

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So many questions remain after a termination for Trisomy 13

So many questions remain. Why do I feel like I’m in someone else’s life? Why don’t I recognize myself anymore? What can I do to help myself get better? By Malky It was a storybook pregnancy: perfect timing, smooth pregnancy, I was feeling great, and I’d gained minimal weight. Then we went in for the second trimester ultrasound at 22 weeks and nothing was perfect anymore. Trisomy 13. No chance of survival. Possible dangers to me if I carry the pregnancy to term. The doctor’s advice was “Stop the pregnancy as soon as possible.” Just like that, everything changed. No warning. Six days later it was over. The baby was […]

Hypoplastic Left Heart Syndrome

What Nobody Tells You

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What nobody tells you - Another 8 long days later, as I was getting ready for our appointment with the fetal cardiologist, our genetic counselor called with the amnio result. It had come back with a diagnosis of something called Mosaic Trisomy 13.

Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. By Gina McGarey I didn’t want kids until I was in my 30s. This past summer we started trying. Fast forward about 4 months and we found out I was pregnant. We were both super excited and planned all of these different ways to tell our parents, siblings, and friends (I have some amazing videos of us telling most of them). This would be the first grandchild for all of our parents and the first great-grandchild for half of […]

Hypoplastic Left Heart Syndrome

Ella, My Only Girl

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by D. L. I had just turned 35 and had decided that I wanted another baby. I had three beautiful boys, and had a feeling that if I got pregnant again I would have my little girl. I always wanted a girl. Don’t get me wrong I adore my boys, but I still really wanted a girl. My husband and I argued a lot about the subject because he was done with having kids. We did keep trying though. It didn’t take long and I was pregnant. I was very happy. This was the first pregnancy I really planned. I felt great. I had horrible nausea with the […]

Stories

Something I’d Never Wish Upon Anyone

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By Amanda Shoemake Many couples, especially the women, who terminate their pregnancy due to medical reasons have felt scared and nervous about sharing their loss. Should I say it was a miscarriage? Should I just say that I lost the baby? Or should I tell everyone what really happened? My husband and I are one of those couples, and I am one of those women, and the moment I left the hospital after my surgical abortion, I thought to myself, “What do I tell people?” It had been very well known on mine and my husband’s Facebook pages that we were expecting. My husband pretty much […]

D&E

My Upstairs Neighbor

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By S.K. I was 20 weeks pregnant when my husband and I went to the hospital for a routine ultrasound. The doctor told us it looked like our baby girl had Trisomy 13, with no chance of survival, and that we would need to have amniocentesis to be sure. While we waited for the results, we would need to make the choice between continuing this pregnancy or ending it. The cutoff for abortion in our state is 23 weeks. We already knew that we would choose a D&E procedure. Our daughter was so disfigured that it would devastate us to see her even if I did give birth. […]

D&E

Hit by an Ice Storm

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By Katie When I was around 14 weeks pregnant with my second child, I started having severe pains. We went to the emergency room and they kept me there for nine hours. They did an ultrasound, and the technician found the umbilical cord had two blood vessels instead of the normal three, and there were massive cysts on his tiny kidneys.They told me not to worry too much, and to just set up an appointment with a perinatologist and schedule another ultrasound. Our appointment fell on the day after Christmas. We talked to a genetics counselor for about 30 minutes before the ultrasound. She said that since […]

Omphalocele

Trusting My Instincts

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By J. C. I’ve started to write this story about five times but never made it more than a few sentences. Fortunately my genetic counselor gave me the link to this web site, a godsend, when we got the results from the amniocentesis. I’ve navigated through the site many times since. My family, including our wonderful two-year-old son, were on vacation in Florida. I had suspected that I may be pregnant, but wasn’t sure. The hormones were flaring and I was starving on the drive there, but still, I questioned myself. I took the pregnancy test in the bathroom of our vacation condo and got to announce to […]

Alobar Holoprosencephaly

Our Hailey Judith

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 By Jess 311 I couldn’t believe it when the home pregnancy test was positive. I thought surely it would not happen so soon. It had only been two months since we started trying. I can’t describe how excited I was, but I thought for sure it couldn’t be true, that I must have let it sit for too long. Well, three more tests with lines and one digital test later and we new for sure. We were having our first child. We couldn’t wait to tell people. I couldn’t wait to get to the doctor to hear the heartbeat. I’ll never forget the first time […]