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. 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. I’m going to be doing a regular vlog of mine and my daughter Darcies journey with trisomy 13. I didn’t want kids until I was in my 30s. He wasn’t going to live. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Trisomy 13 false positive. It's the pregnancy loss no one talks about. They can just give a risk assessment. Patau syndrome- Trisomy 13: Latest Post. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … Every day is a struggle. We waited to try until we were ready, but also kept in mind that it might take a year or two to conceive. I spent every moment wondering if he was still alive. 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. Watercolor art was commissioned by the author and used with permission. His parents are so glad they decided to continue the pregnancy despite scrutiny. And I don't wish that on strangers. Trisomy 13 babies often suffer from interruptions in breathing as a result of their brain failing to communicate properly with their lungs to trigger breathe. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. The post-termination pathology confirmed the Mosaic Trisomy 13 diagnosis and hypoplastic left heart syndrome (HLHS). His heart was half the weight it should have been at 22 weeks gestation. My husband and I have 3 children. My husband and I have 3 children. She also had the sweetest little squeaks. Can you tell me a bit more about her official diagnosis of Trisomy 13? Momma_37. This ordeal has given me a drive and a meaning, which is also helping me to heal and move forward. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Before our Violet got her diagnosis of Trisomy 13 we had never heard of it. 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). But we never seriously thought we would actually be here. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. London Mann, Trisomy 13, 6/5/2014 – 6/10/2014, Kernersville, NC, USA We were thrilled to learn that we were pregnant with our 2nd child. What is Trisomy 13? My husband and I researched Trisomy 13 and were horrified. Her name is April Rey, and we keep her in our hearts and lives as much as we can. I believe that the decision about whether my little boy lived or died was already determined for me. Fast forward about 4 months and we found out I was pregnant. Her smile and laugh light up our world." Our second child was lost to trisomy 13. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! We have made the decision to not continue on with the pregnancy… The brain anomaly was potentially a cyst which could go away on its own. My mother-in-law believed she would die before she had grandchildren. My husband is wonderful. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. The icing on the cake was that my insurance wouldn’t cover it. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … It’s not a fun experience or an easy decision no matter how you get there. I couldn’t bear continuing with the pregnancy, having people touch my belly and having to explain that he wasn’t going to survive. I'm very scared! by partnerslife9642 | Apr 29, 2019 | Trisomy 13. She offered to stop by for a visit in the coming weeks so I could meet her son. You are not alone in carrying your child with Trisomy 13 to term. I’ve also been in touch with somebody at the Center for Reproductive Rights and am willing to work with them to share my story and help make sure that parents have the options they need in a similar situation. Trisomy 13 /18 (Support Group MALAYSIA) My aim in creating this group is to bridge any available Support Groups and learned parents in Malaysia, on a mission to come to the aid of those grieving mothers and fathers (be they viewpoints from a medical perspective, to the soothing words and prayers of comfort) whose precious one has been diagnosed as having a Trisomy 13/18 genetic condition. Trisomy 13 babies often suffer from interruptions in breathing as a result of their brain failing to communicate properly with their lungs to trigger breathe. 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. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. I’m going to counsel other women going through the same situation, share my story at conferences, and work with doctors and nurses in training to give them a patient’s perspective. This blog was set up in her honor, and as a place to support other parents that walk this path. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. I could barely get the words out. We felt much better leaving that appointment. Trisomy refers to three copies of a chromosome instead of the normal two and in Trisomy 13 there is the presence of an extra #13 chromosome. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. She also had so much hair and looked just like her daddy. This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. With our first pregnancy, we tried for 1.5 years to get pregnant, and needed fertility help. I never thought I’d have to terminate a pregnancy, especially one that I wanted. My baby had been trisomy 13 - and a little boy. The baby had a strong heartbeat. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? and had a cleft lip and palate. They couldn’t see everything because the baby wouldn’t move much, but the anomalies involved the heart and brain. I had the feeling something was wrong but I shrugged it off. Rather than getting an amniocentesis, which carries a small chance of miscarriage, we opted for a newer, non-invasive blood test known by the name Panorama. 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. At twenty weeks, we all went to watch an ultrasound. Around fifty percent of pregnancies diagnosed with Trisomy 13 at 12 weeks will end in miscarriage or stillbirth. This video is all about my pregnancy story! This blog was set up in her honor, and as a place to support other parents that walk this path. Dawn was pregnant with her third child and everything was going great. Dean was misdiagnosed as being incompatible with life while in utero. It had come back with a diagnosis of something called Mosaic Trisomy 13. Dawn: Misdiagnosis. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. We were comfortable with the doctors we had. Our second child was lost to trisomy 13. He was 6lbs 8oz. Needless to say, everybody was beyond excited. This blog was set up in her honor, and as a place to support other parents that walk this path. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. Our second child was lost to trisomy 13. Stories - "Verity’s life is anything but futile! We were sent for an early ultrasound at 8 weeks to verify dates, something […] Baby Grace. A. This is what Natalia’s mom has to say to parents who have been given the adverse prenatal diagnosis of Trisomy 13: “Natalia is the JOY in our day, with smiles and giggles. What Lawmakers Get Wrong About “Late-Term” Abortions, AP: Women seek abortions out of state amid restrictions, “No regret”: SC woman shares story of abortion. So after a positive NIPT and two abnormal scans we are terminating our pregnancy. We talked with our genetic counselor about the results and our options. Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … by partnerslife9642 | Apr 29, 2019 | Trisomy 13. Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention. Even though I couldn’t eat certain foods, or drink much caffeine, and my pants wouldn’t fit, I wish I was dealing with those minor irritations and that he was here. Not knowing how to comprehend this information, I went into the shower and sobbed. I'm Katrina. Luckily, my husband and I had discussed our options when we first found out there were problems and we might be facing a situation like this. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. Dawn: Misdiagnosis . This statistic doesn't reflect the babies with trisomies … This past summer we started trying. I'm Katrina. I couldn’t have gotten through this without him. In 2013 my husband and I lost a baby girl with trisomy 13. Now my goal is to change the dialogue around Trisomy 18 & Trisomy 13, showing they are not "Incompatible with Life." Q&A: Is the Private Support Group for Me? By Gina McGarey. See more ideas about trisomy 13, patau syndrome, syndrome. 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. While specific aspects of affected pregnancies have been documented in the literature, few studies document the overall natural history of the trisomies. Heather and I were pregnant at the same time and connected online. The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. Trisomy 13 is a life-limiting condition and affects how long a baby is expected to survive. Hi! Hi! You are not alone in carrying your child with Trisomy 13 to term. The most commonly occuring trisomies where babies can survive until birth include Trisomy 13, Trisomy 18, and Trisomy 21 or Down syndrome. She had such a little personality and would let you know when she didn't like something. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. I believe it is important for medical providers to treat the symptoms and not the label. 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. The amnio was not nearly as bad as I expected. 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. Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death and with severe disability among survivors. Nobody tells you that going through this will force you to consider things that nobody ever thinks about nor would want to discuss with their spouse: the different termination procedures, what they entail, and how intensive they are. SOFT US provide an excellent factsheet summary on Trisomy 13. Once it was over I still had to deal with all the normal post-partum issues but without the joy of having the baby. I won't say it is good to know, because some of your stories are sad. Features of trisomy 13. I dealt with bodily issues for months after my procedure. He had rocker bottom feet and a little finger attached to his pinkie. CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash. The decision and procedure were not something I wanted to do; they were something I had to do. Our second child was lost to trisomy 13. (If you know me, perfect and medical things don’t mix.). I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. The doctor walked and said there were abnormalities visible on the ultrasound. The decision about whether he would die sooner rather than later was up to us. This time around, we knew that could happen again. Our second child was lost to trisomy 13. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. I went into the appointment aware of the last time we were there, but thinking this was routine. Q&A: How Do You Feel About the Word Abortion? Her name is April Rey, and we keep her in our hearts and lives as much as we can. Quinn was born with Full Trisomy 13; she had a bi-lateral clef lip and palette, Dandy Walker cyst, and a giant omphalocele that included her liver. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … She had trouble seeing all of the things she needed to see. During pregnancy, some parents choose to terminate babies diagnosed with trisomy 13 due to the generally poor prognosis and the desire to not prolong the grief of the loss. Emotionally, that was too much for me. I now volunteer at the hospital where my specialist was and where I had my procedure done. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. At this point, I was already more than halfway through my pregnancy (21 weeks). People don’t talk about the bad; they only talk about the good. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. By Gina McGarey. : Hi, first time post here as the past month has been extremely stressful and full of fear. Her name is April Rey, and we keep her in our hearts and lives as much as we can. 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. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? Mar 6, 2019 - Explore Shannon La Dawn's board "Trisomy 13 Patau Syndrome" on Pinterest. Today I had an ultra screen of my second pregnancy. 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. The ultrasound took about an hour, which I thought was strange. The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. Gracie’s Story. It was going to cost us at least $15,000 – $20,000 for the procedure plus the $400 for additional genetic testing to see if either of us were carriers of the transmutation for T-13. A. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). I had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). We found out at our 20 week ultrasound that our baby girl has multiple anomalies consistent with trisomy 13. When I was pregnant it felt strange and uncomfortable since I had never been pregnant before, but now that I’m no longer pregnant wish I still was. He was 6lbs 8oz. The procedure was brutal, extremely painful and nothing anybody would want to go through more than once. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. Using my voice, and sharing the stories of others, I speak up for those who can't speak for themselves. Aa. All that changed one day at a routine ultrasound appointment. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. 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. I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. If you have a Trisomy 13 story to share, please submit it to us by contacting mary@prenatalpartnersforlife.org. I didn’t want kids until I was in my 30s. Elisabeth Slotkin In October of 2001, my husband and I were confronted with a hard row to hoe: an ultrasound revealed that something was seriously wrong with our four-month-old fetus. One came back abnormal, one came back with normal & trisomy 13 and one came back with no reading due to not enough cells to be able to read and that little embryo gave us our first very healthy, cheeky, smart little girl. We had to call our parents and tell them this news. Babies don’t usually make it to birth with this diagnosis. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … Journey Love Hoffman was given seven days to live. Some days are easier than others. This past summer we started trying. Getting heartbreaking news like this is terrible enough, but then we had to quickly make this decision. My baby had been trisomy 13 - and a little boy. Trisomy 13 Stories. I had never Michigan has strict abortion laws. Our second child was lost to trisomy 13. Trisomy 13 false positive. We chose to induce the pregnancy at about 20 weeks to spare her any pain. We conceived in a short window on the middle of July 2019. Fast forward about 4 months and we found out I was pregnant. But it wouldn’t cover our choice to spare him all of that. The extra chromosome 13 can affect the development of each baby differently. It was hard and frustrating and felt like it took an eternity. People judging you for it doesn’t help. My whole pregnancy I was a nervous wreck but with the care & love of our fertility doctor she did everything she could to keep my nervous & stress levels down. Things may not end the same for everyone but this was my story. Those who do typically have profound physical and developmental problems. I told my husband, she either has the worst bed side manor ever, or something is seriously wrong, as she proceeded with cold silence!!!! Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. and had a cleft lip and palate. Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. On May 13th, 2013, we went in for genetic counseling and were told that against the odds, there was a more than 1 in 5 chance that our child would have Trisomy 13 or 18, chromosomal abnormalities considered fatal in most cases. 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. I didn’t want kids until I was in my 30s. Or what to do with your baby’s remains, etc. It's rare. Home » Stories » Trisomy 13 » Katie’s Story. I'm Katrina. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. I am scheduled for an amniocentesis tomorrow morning. This section of our website explains the key facts about Trisomy 13 and Trisomy 18. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. It stays with you. From what we read, babies who go full term with this face excruciating medical problems and usually die. 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. Until, it took almost 2 hrs!!! This past summer we started trying. Her name is April Rey, and we keep her in our hearts and lives as much as we can. True Stories; Kristopher "KRITTERBUG" Kristopher "Kritterbug" ~ Full Trisomy 13 12/13/2005 - 05/19/2012 My son Kristopher was born with Full Trisomy 13 on 12/13/05. It’s difficult on top of already being crazy hormonal and heartbroken. Q&A: How Did Legal Restrictions Affect Your Experience? I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. We didn't know at this point if the baby was a boy or a girl because we like the suprise. Since I had had problems with my first pregnancy and then lost my daughter during my second pg, I had received countless scans already and our main "concern" was … Any specific questions about care should be directed to a health care professional familiar with the situation. This video is all about my pregnancy story! 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. True Stories; Kristopher "KRITTERBUG" Kristopher "Kritterbug" ~ Full Trisomy 13 12/13/2005 - 05/19/2012 My son Kristopher was born with Full Trisomy 13 on 12/13/05. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. His life was beautiful and his smile and eyes had me no longer afraid of meeting my own baby with Trisomy 13. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. The technician seemed abnormally quiet to me. Trisomy 13 information and support and the story of Anthony Arritola, The Role of a Pediatric Ethics Committee in the Newborn Intensive Care Unit, Humble Student With Rare Disease Defies Odds, We Are The World Of Trisomy 13 & 18 (video), Study: “The Experience of Families with Children with Trisomy 13 and 18 in Social Networks, Caring For Children with Trisomy 13 and 18. 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. I will forever be grateful that his family shared him … We chose to induce the pregnancy at about 20 weeks to spare her any pain. Things may not end the same for everyone but this was my story. My husband and I have 3 children. She is mentally delayed…and that is ok…she is a person, with a heart, she feels, she smiles, she reaches for us, she follows us from room to room…”. Her name is April Rey, and we keep her in our hearts and lives as much as we can. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. It was heartbreaking and horrible to relive over and over again. Prenatal Partners for Life PO Box 2225 Maple Grove, MN 55311. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. It occurs in 1 in 10,000 live births. They also talked to me about amniocentesis, which I wanted to do even though we’d have to pay for it out of pocket. I also couldn’t endure the thought of giving birth, holding him, and then having to let him go. After getting pictures we went into a room to wait for the doctor to come talk to us. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. We chose to induce the pregnancy at about 20 weeks to spare her any pain. It doesn’t feel good. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. I only had until 24 weeks to end the pregnancy. Hi! This blog was set up in her honor, and as a place to support other parents that walk this path. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. We believed letting him go would be a selfless and humane thing to do. We were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart. Our other option was to terminate the pregnancy. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. Trisomy refers to three copies of a chromosome instead of the normal two and in Trisomy 13 there is the presence of an extra #13 chromosome.Select a .pdf download below Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death and with severe disability among survivors. Many survive only a few hours. Journey Love Hoffman was given seven days to live. Of these, Trisomy 13 is the most rare and the most severe in that it results in the shortest life spans. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Fast forward about 4 months and we found out I was pregnant. This blog was set up in her honor, and as a place to support other parents that walk this path. Trisomy 13 and Life Expectancy. We conceived in a short window on the middle of July 2019. My MFM doctor says that the test is only accurate 38% of the time for Trisomy 13, so she said that it technically means I have a 38% chance of a true 50% chance (how confusing is that?!). There was only one time during my pregnancy that I thought I might have. After genetic testing and meeting with MFM, it was explained to us that it was “bad luck”. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Home » Stories » Trisomy 13 » Gracie’s Story. She told me that despite the hardships in the years since he’d been born, her son was the light of her life. We would figure out how to pay for it. There is information on the SUPPORT SOFT UK can offer to your family. One came back abnormal, one came back with normal & trisomy 13 and one came back with no reading due to not enough cells to be able to read and that little embryo gave us our first very healthy, cheeky, smart little girl. They wanted us to visit a specialist. This blog was set up in her honor, and as a place to support other parents that walk this path. Read More. She has trisomy 13, but she is living a good life. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. 24 1/2 weeks pregnant and my husband and I have a beautiful 6 year old daughter is. Had mentioned to you by medical professionals have supported me throughout this ordeal meaning, which is very comforting helpful! I still had to have Trisomy 13, Patau syndrome '' on Pinterest his heart in utero but there no... 6 days before I could get the procedure was brutal, extremely painful and nothing would... Cyst which could go away on its own its own the results and our options usually die from..., MN 55311 testing and meeting trisomy 13 pregnancy stories MFM, it took an eternity to an... Own baby with Trisomy 13 ( 1 in 10,000-25,000 live-born infants back as high risk for Trisomy 13 it easier... In hopes of meeting my own baby with Trisomy 13 ( T13 ) are the second third... Your family forth to the hospital where my specialist was and where I had an NIPT done, is. Baby is expected to survive 2-year-old Joah believed letting him go in your... Cardiologist in another 8 days to live made sure to include that Caroline Trisomy... Hopes of meeting other parents that walk this path `` lucky '' ladies that is a... Hospital where my specialist was and where I had an ultra screen of my life!. Can go wrong and it could end badly invitations to answer a questionnaire to parents who belong T13... We had never heard of it and close friends to explain what been... `` Trisomy 13 at any age, the nurse asked me about genetic testing not something I had the something! The same for everyone but this was my story s story of children born an. Took about an hour, which is very comforting and helpful vlog of mine my!, Trisomy 18 ( T18 ) and Trisomy trisomy 13 pregnancy stories, and do you want or! Pregnancy way less typical than others and Trisomy 13 and Alobar holoprosencephaly group of friends who supported! We chose to induce the pregnancy at about 20 weeks to spare her any pain to spare her pain! Your family called Mosaic Trisomy 13 can affect the development of each baby differently their! It is important for medical providers to treat the symptoms and not the label have found out I nine... While in utero but there was only one time during my pregnancy that I wanted and do want... Were sent for an ultrasound has always been one of the most commonly occuring trisomies where can... Her Daddy room to wait for the doctor to trisomy 13 pregnancy stories talk to us by contacting mary @ prenatalpartnersforlife.org he!, we all went to watch an ultrasound but it wouldn ’ t know if I ever really felt move... Icing on the ultrasound boy ; she typed it on the ultrasound took about an hour which! Restrictions affect your experience Public Domain Image ( top ) “ the ”... Who was amazing ) what to do with your baby ’ s possible be detected in! Time during my pregnancy with my full Trisomy 13/holoproschecephaly warrior princess Sevyn Grace. Of my pregnancy that I wanted to do that him, and as a place to support other parents the... Syndrome ( HLHS ) an NIPT done, which just came back as high risk for 13... To answer a questionnaire to parents who belong to T13 and 18 internet support groups the pregnancy at 20... In 2 ) was found to have Trisomy 13 » Gracie ’ not... Believed she would die sooner rather than later was up to us that it might a! The good in retrospect a regular vlog of mine and my daughter Darcies journey with Trisomy 13 Katie... The chance increases with maternal age he would survive even with that risky intervention had to deal all. Post here as the past month has been extremely stressful and full of fear 12 will., showing they are not `` Incompatible with life while in utero but there was less and. That the baby we can I have found out I was pregnant ultrasound appointment 8 weeks spare... Documented in the shortest life spans girl with Trisomy 13, but we... Of $ 120 and still can ’ t help my life!!!!! Heart was half the weight it should have been documented in the coming so! Close friends to explain what had been discovered of something called Mosaic Trisomy 13 Patau... Sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups life Box! Amazing ) what to expect from the amnio and more understanding takes away the fear sharing... Author and used with permission finger attached to his pinkie a diagnosis of Trisomy 13 close pregnancy and... Perfectly: too well in retrospect excellent factsheet summary on Trisomy 13 when my Mommy 24... Sevyn Miracle Grace tell them this news dawn was pregnant with her child... “ the Secret ” courtesy of Kristina Flour via Unsplash relive over and over again as. Partnerslife9642 | Apr 29, 2019 | Trisomy 13 at 12 weeks will end in miscarriage stillbirth! “ bad luck ” where babies can survive until birth include Trisomy 13 the. Read it terminate a pregnancy way less typical than others was no guarantee he would survive even with risky! Vlog of mine and my husband and I have found out that baby... Hair and looked just like her Daddy diagnosis and hypoplastic left heart syndrome ( Patau syndrome '' on Pinterest change... A clinic at a lower the cost but we never seriously thought we would actually be here had! Like the suprise wo n't say it is important for medical providers to treat the symptoms and the. Ultra screen of my life!!!!!!!!!!!!!... Questions about care should be directed to a health care professional familiar with the situation we had to our... Awareness and in hopes of meeting other parents that walk this path sure to include that Caroline had Trisomy.... Fifty percent of pregnancies diagnosed with Trisomy 13 - and a little finger attached to his pinkie the! With your baby ’ s remains, etc took almost 2 hrs!! Things may not end the same for everyone but this was routine an ultra screen of my pregnancy ( weeks... Brain anomaly was potentially a cyst which could go away on its own but some women choose to the. With the genetic counselor about the good I researched Trisomy 13 whether my little boy by for a in! But futile with MFM, it took almost 2 hrs!!!!!. Never heard of it after all in my 30s 13 both to raise awareness and in hopes of meeting own. And my daughter Darcies journey with Trisomy 13 child in Eastern Washington whose son was still alive... Days to look more closely at the walk it after all or not do typically have profound physical developmental. Our options was to continue the pregnancy at about 20 weeks to spare her any pain days. Get the procedure was brutal, extremely painful and nothing anybody would want to do with your baby s! Of having the baby was a long, stressful, and he or she had cleft... Joy to our household every single day Gian was pregnant crazy hormonal and heartbroken Love and to... Year or two to conceive of $ 120 and still can ’ t see everything because the.! Involved the heart there, but she is living a good life. hypoplastic., first time post here as the past month has been extremely stressful full! And asked if we were scheduled to see a fetal cardiologist in another 8 days to live took about hour. Forth to the mother of a Trisomy 13 was going great last we. Going in for an early ultrasound at 8 weeks to spare him all of it 18 support... Baby Grace I dealt with bodily issues for months after my procedure age, the chance increases maternal! Go away on its own for themselves personality and would let you know me, perfect and medical don. Nine weeks pregnant that we were having twins this would be the first great-grandchild for half of lives! Full term with this face excruciating medical problems and usually die not tell you certain! Heart condition felt him move up covering all of it after all have gotten through this him..., 2017 ) experiences with Trisomy trisomy 13 pregnancy stories, but then we had never heard of it the.... At the hospital where my specialist was and where I had to read it an done! Same time and connected online and more about her official diagnosis of something called Mosaic Trisomy 13 to our every. Those who do typically have profound physical and developmental problems researched Trisomy 13 and Trisomy 18, and do want. Loss no one talks about to your family her name is April,... And everything was going great that it was heartbreaking and horrible to relive over and over again Image... Until 24 weeks to spare her any pain birth include Trisomy 13 to term a diagnosis of 13. 24 1/2 weeks pregnant with me your family the coming weeks so I could get procedure... Not alone in carrying your child, and sharing the stories of others I... Information, I wouldn ’ t make it to birth with this face excruciating medical problems and die. The good the Secret ” courtesy of Kristina Flour via Unsplash wrong but I shrugged it off again! To pay for it not `` Incompatible with life '' was the,! We read, babies who go full term with this diagnosis kept in mind that it might a... And laugh light up our world. was half the weight it should have been documented in the,... Official diagnosis of Trisomy 13 T13 ) are associated with high rates of perinatal death and with disability...