Category: Trisomy 13 (Patau syndrome)

mosiac trisomy 13 - what nobody tells you

What Nobody Tells You

Posted on gracePosted in Hypoplastic Left Heart Syndrome, Trisomy 13 (Patau syndrome)

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 […]

Ella, My Only Girl

Posted on gracePosted in Hypoplastic Left Heart Syndrome, Neural Tube Defects, Spina Bifida, Trisomy 13 (Patau syndrome)

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 […]

Something I’d Never Wish Upon Anyone

Posted on gracePosted in Stories, Trisomy 13 (Patau syndrome)

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 […]

My Upstairs Neighbor

Posted on gracePosted in D&E, Trisomy 13 (Patau syndrome)

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. […]

Hit by an Ice Storm

Posted on gracePosted in D&E, Trisomy 13 (Patau syndrome)

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 […]

Trusting My Instincts

Posted on gracePosted in Omphalocele, Stories, Trisomy 13 (Patau syndrome)

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 […]

Our Hailey Judith

Posted on katiePosted in Alobar Holoprosencephaly, Stories, Trisomy 13 (Patau syndrome)

 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 […]

What is Trisomy 13?

Posted on ewpcontentPosted in Diagnosis Information, Trisomy 13 (Patau syndrome)

Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. Infants born with trisomy 13 often have several of the following conditions: heart defects, kidney defects, neurological problems, microcephaly (small head), holoprosencephaly (failure of the brain to divide into halves during development), severe mental deficiency, polydactylism (extra fingers or toes), rocker-bottom feet, microphthalmia (small eyes), malformed nose, and cleft lip and/or cleft palate.The existence of many of these life-threatening medical defects cause many infants with trisomy 13 to […]