We chose to induce the pregnancy at about 20 weeks to spare her any pain. This statistic doesn't reflect the babies with trisomies … They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. From what we read, babies who go full term with this face excruciating medical problems and usually die. If you have a Trisomy 13 story to share, please submit it to us by contacting mary@prenatalpartnersforlife.org. Q&A: How Do You Feel About the Word Abortion? I paid a grand total of $120 and still can’t believe it. See more ideas about trisomy 13, patau syndrome, syndrome. She has trisomy 13, but she is living a good life. We went for our anatomy scan at 20 weeks. Momma_37. He was 6lbs 8oz. After another ultrasound, the doctor gave us what seemed like encouraging news: although the heart problems were severe (underdeveloped left valve, insufficient blood flow, a hole between the left and right valve, and narrow ventricles) they thought these issues could be monitored and repaired. He had rocker bottom feet and a little finger attached to his pinkie. Fast forward about 4 months and we found out I was pregnant. Others continue the pregnancy due to personal beliefs against abortion, or because they feel they would rather have some time with the baby, even if it turns out to be short. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. (We found out we are not). It is likely that this is what will be the most detrimental factor in allowing him to stay with us for any period of time. In a condition known as trisomy, an affected individual has three copies of a particular chromosome instead of two (human beings are supposed to have 46 chromosomes, 23 pairs). A good quality of life.” A good quality of life.” Anna, pictured here during her first birthday, is different from most babies born with trisomy 13, in that she didn’t have the same life-threatening birth defects or breathing problems that lead to early death, according to Leandra Tolusso, a prenatal genetic counselor. A. Q&A: Is the Private Support Group for Me? Her name is April Rey, and we keep her in our hearts and lives as much as we can. People don’t talk about the bad; they only talk about the good. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Getting heartbreaking news like this is terrible enough, but then we had to quickly make this decision. Her name is April Rey, and we keep her in our hearts and lives as much as we can. The specialist asked me to terminate my pregnancy which I refused immediately, with prayers/faith/hope I continued my pregnancy hoping for a miracle & that Aiden would be healthy. This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. I had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). I’m going to be doing a regular vlog of mine and my daughter Darcies journey with trisomy 13. (If you know me, perfect and medical things don’t mix.). Not only was there a timeline but my two termination options (D&E or L&D) would narrow to one (L&D) if he grew too big. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. This blog was set up in her honor, and as a place to support other parents that walk this path. Things may not end the same for everyone but this was my story. Can you tell me a bit more about her official diagnosis of Trisomy 13? Gracie’s Story. His heart was half the weight it should have been at 22 weeks gestation. In my searches online, and all of my research on trisomy 13 and others’ experiences, I simply didn’t find information that was representative of what was real. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. You are not alone in carrying your child with Trisomy 13 to term. Her name is April Rey, and we keep her in our hearts and lives as much as we can. This examination is carried out especially for mothers who are at risk of having babies with genetic disorders, for example due to a history of genetic disorders in the family. Patau syndrome- Trisomy 13: Latest Post. Read More. We didn't know at this point if the baby was a boy or a girl because we like the suprise. Journey Love Hoffman was given seven days to live. We talked with our genetic counselor about the results and our options. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. The doctor’s wanted my Mommy and Daddy to terminate the pregnancy but they decided that they wanted to get to know me and that only God would decide what was going to be my fate. Our second child was lost to trisomy 13. Fast forward about 4 months and we found out I was pregnant. Those who do typically have profound physical and developmental problems. We chose to induce the pregnancy at about 20 weeks to spare her any pain. My mother-in-law believed she would die before she had grandchildren. We chose to induce the pregnancy at about 20 weeks to spare her any pain. My husband and I have 3 children. This time around, we knew that could happen again. My husband and I researched Trisomy 13 and were horrified. The doctor’s wanted my Mommy and Daddy to terminate the pregnancy but they decided that they wanted to get to know me and that only God would decide what was going to be my fate. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. This past summer we started trying. This video is all about my pregnancy story! The brain anomaly was potentially a cyst which could go away on its own. Emily Gian was pregnant, but she had to have a termination after her unborn baby was found to have trisomy 13. I'm Katrina. The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. My husband is wonderful. He wasn’t going to live. Katie’s Story. On the front is a picture of the sun (which Caroline loved) with her name and “Beloved Daughter, Trisomy 13 Miracle.” On the back, we wrote, “Proud Parents Walking for Caroline and Trisomy 13 Awareness,” followed by a beautiful picture of our baby girl. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. His parents are so glad they decided to continue the pregnancy despite scrutiny. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. This blog was set up in her honor, and as a place to support other parents that walk this path. The post-termination pathology confirmed the Mosaic Trisomy 13 diagnosis and hypoplastic left heart syndrome (HLHS). The baby had a strong heartbeat. I will forever be grateful that his family shared him … I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. and had a cleft lip and palate. Trisomy 13, also called Patau syndrome is a chromosomal disorder where there are three copies of chromosome 13 and can cause severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. Stories - "Verity’s life is anything but futile! Before our Violet got her diagnosis of Trisomy 13 we had never heard of it. My husband and I have 3 children. The panorama testing showed high risk for trisomy 13 and ultrasound show soft indicators such as defects on the brain, heart defects and bright organs. This blog was set up in her honor, and as a place to support other parents that walk this path. It had come back with a diagnosis of something called Mosaic Trisomy 13. On top of all of that, neither of us wanted to put an innocent child through the things that a child born with this condition would face knowing he would die anyway. The technician seemed abnormally quiet to me. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. This section of our website explains the key facts about Trisomy 13 and Trisomy 18. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. It stays with you. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … It occurs in 1 in 10,000 live births. The insurance would have covered the $200,000+ expense for in utero heart surgeries and all of the follow-ups if we were attempting to keep him alive. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … Our second child was lost to trisomy 13. I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. But it wouldn’t cover our choice to spare him all of that. I was advised to terminate as told it was trisomy 13 or 18 and incompatible with life but I refused till I knew more info. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … Everything was going perfectly: too well in retrospect. In 2013 my husband and I lost a baby girl with trisomy 13. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. Emotionally, that was too much for me. We chose to induce the pregnancy at about 20 weeks to spare her any pain. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … Our second child was lost to trisomy 13. Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. She offered to stop by for a visit in the coming weeks so I could meet her son. I spent every moment wondering if he was still alive. I wanted to know if there were additional problems. 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