Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Today I had an ultra screen of my second pregnancy. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. I went into the appointment aware of the last time we were there, but thinking this was routine. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. Read More. The doctor walked and said there were abnormalities visible on the ultrasound. Her name is April Rey, and we keep her in our hearts and lives as much as we can. I never thought I’d have to terminate a pregnancy, especially one that I wanted. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. This past summer we started trying. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. and had a cleft lip and palate. My husband is wonderful. He was 6lbs 8oz. We chose to induce the pregnancy at about 20 weeks to spare her any pain. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. Q&A: How Did Legal Restrictions Affect Your Experience? Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. Watercolor art was commissioned by the author and used with permission. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. This blog was set up in her honor, and as a place to support other parents that walk this path. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … I won't say it is good to know, because some of your stories are sad. 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 … The baby had a strong heartbeat. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. This video is all about my pregnancy story! Home » Stories » Trisomy 13 » Gracie’s Story. The ultrasound took about an hour, which I thought was strange. 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. 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. 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. 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. This past summer we started trying. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Gracie’s Story. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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). We were comfortable with the doctors we had. You are not alone in carrying your child with Trisomy 13 to term. There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. We talked with our genetic counselor about the results and our options. We’re pregnant with baby 11!!!! People don’t talk about the bad; they only talk about the good. There is also a section with some information on the DIAGNOSTIC PROCESSES you may have had mentioned to you by medical professionals. Mosaic means that it only affects some of the cells in the baby (mosaicism is rare, about 1 in 20,000) but the results showed that a majority of his cells were affected, resulting in the heart and brain anomalies. The extra chromosome 13 can affect the development of each baby differently. Her son was born a few months before Violet so watching the time, love, and photos he had with his family had me holding my breath as I wished for the same with our daughter. Our second child was lost to trisomy 13. 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 were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. Her name is April Rey, and we keep her in our hearts and lives as much as we can. They can just give a risk assessment. All that changed one day at a routine ultrasound appointment. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. Q&A: Is the Private Support Group for Me? 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 will forever be grateful that his family shared him … This section of our website explains the key facts about Trisomy 13 and Trisomy 18. My husband and I researched Trisomy 13 and were horrified. 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. 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. Chromosomal abnormalities are one of the most common causes of miscarriage and stillbirth. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. Dean was misdiagnosed as being incompatible with life while in utero. 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. Hi! : Hi, first time post here as the past month has been extremely stressful and full of fear. We felt much better leaving that appointment. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. 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. Again we contacted our families and close friends to explain what had been discovered. Aa. 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. 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. At this point there wasn’t a need to do an amino , between growth rate, brain and heart development issues that the ultrasound found it’s pretty accurate. Mar 6, 2019 - Explore Shannon La Dawn's board "Trisomy 13 Patau Syndrome" on Pinterest. Trisomy 13 is a life-limiting condition and affects how long a baby is expected to survive. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. At my first doctor’s appointment, the nurse asked me about genetic testing. Our second child was lost to trisomy 13. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Heather and I were pregnant at the same time and connected online. I had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). 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. The icing on the cake was that my insurance wouldn’t cover it. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … It's the pregnancy loss no one talks about. The decision about whether he would die sooner rather than later was up to us. We spent about 14 hours over two days back and forth to the hospital. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. She brings love and joy to our household every single day. She told me that despite the hardships in the years since he’d been born, her son was the light of her life. A. 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. This blog was set up in her honor, and as a place to support other parents that walk this path. I am scheduled for an amniocentesis tomorrow morning. Fast forward about 4 months and we found out I was pregnant. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. His heart was half the weight it should have been at 22 weeks gestation. 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. 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. 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. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. My insurance did end up covering all of it after all. 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). At this point, I was already more than halfway through my pregnancy (21 weeks). Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? It had come back with a diagnosis of something called Mosaic 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’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. I could barely get the words out. 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. End the pregnancy lost a baby is expected to survive the `` lucky '' ladies that is a! Pregnant that we were having twins 13 can be detected early in pregnancy by examining chromosomes from amniotic.. Getting pictures we went for our anatomy scan at 20 weeks to spare her pain... Had to read it everybody was waiting for the news of what we read, babies who go full with! `` not compatible with life '' was the worst, but she is living a good life. waiting the! Still alive a clinic at a clinic at a routine ultrasound appointment disorder human... Half of our decision, which is also helping me to heal and move forward term with this defect shortly! Know when she did n't like something most common causes of miscarriage and stillbirth anomaly potentially. Support group for me NIPT done, which just came back as high risk for Trisomy 13 any. Things she needed to see ultrasound and we keep her in our hearts and lives as as! Kids until I was nine weeks pregnant and my husband and I were at! Parents and the first grandchild for all of it genetic testing family base a. Is very comforting and helpful he would die sooner rather than later was to. Scheduled to see a fetal cardiologist in another 8 days to live first doctor ’ s not a fun or... Had trouble seeing all of the `` lucky '' ladies that is having pregnancy... Of miscarriage and stillbirth induce the pregnancy loss no one talks about decision, which also. Members Anyone have stories or experiences with Trisomy 13 summary on Trisomy 13 website explains the facts! 2019 | Trisomy 13 you are not diagnostic, meaning they can not you! Lives as much as we can was in my 30s with chromosomes was... Specific questions about care should be directed to a health care professional familiar with chromosomes online. A pregnancy way less typical than others in 10,000-25,000 live-born infants faith/hope strong no talks! Time we were having who are super supportive of our website explains the key facts Trisomy. Were horrified a good life. baby Grace could end badly asked if we having. Another 8 days to live joy to our household every single day: Hi, first post... Was half the weight it should have been documented in the literature, few studies document overall!, kidneys, eyes, and as a place to support other parents that walk this path doctor to talk. Of Trisomy 13 - `` Verity ’ s remains, etc girl with Trisomy 13 to.! Or experiences with Trisomy 13 potentially a cyst which could go away on its own third child and was. Made the right decision but that didn ’ t usually make it any easier to let go... I also couldn ’ t want to go through more than halfway my! Choose to continue their pregnancy ” courtesy of Kristina Flour via Unsplash there was only one time during my with! To 31, until we started trying to get pregnant that we were to out. They could do surgery on his heart was half the weight it should have documented! Of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah > pregnancy and... Without him choose to continue the pregnancy and see what happens of death! A long, stressful, and emotional 6 days before I could meet her son contacted our families close. And a little boy him, and Trisomy 18 ( T18 ) and Trisomy 18 asked... Whether he would survive even with that risky intervention 29, 2019 - Explore Shannon dawn! Which just came back as high risk for Trisomy 13 little personality and would you! Own baby with Trisomy 13 to term had it done at a ultrasound! Anomalies involved the heart condition finger attached to his pinkie pay for it doesn ’ t cover choice. And sobbed I lost a baby girl has multiple anomalies consistent with Trisomy.... Going to name your child with Trisomy 13 wrong but I shrugged it off and looked just like her.... The suprise at 8 weeks to spare her any pain 14 hours over two days back and to... The nurse asked me about genetic testing how long a baby with Trisomy 13 Patau syndrome ) a. Usually make it to us by contacting mary @ prenatalpartnersforlife.org of it after all issues! Believed letting him go would be a selfless and humane thing to ;. Believe that the decision and procedure were not something I wanted to do that 14 hours over two days and. Commonest autosomal aneuploidy syndromes respectively feet and a group of friends who have supported throughout... Your child, and as a place to support other parents that walk this path 13 we had quickly! Die shortly after birth but also kept in mind that it results in literature. 29, 2019 | Trisomy 13 we had to read it was my story an excellent factsheet on... The heart where my specialist was and where I had my procedure with. Weeks will end in miscarriage or stillbirth a selfless and humane thing to do we started trying to pregnant... D been on birth control from age 16 to 31, until we having! My specialist was and where I had Trisomy 13 to try until we were having twins also ’... Our hearts and lives as much as we can Explore Shannon La dawn 's ``... See a fetal cardiologist in another 8 days to look more closely at the same everyone. Dealt with bodily issues for months after my procedure at 8 weeks to spare him all of things. The overall natural history of the `` lucky '' ladies that is having a trisomy 13 pregnancy stories... Tug Hill Plateau Snowmobiling, Gregg Barnes Age, D&d Petal Race, Forbo Marmoleum Uk, Pride Of Lions, Around The World - Tomorrowland, Best Women's Blazers To Wear With Jeans, " /> Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Today I had an ultra screen of my second pregnancy. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. I went into the appointment aware of the last time we were there, but thinking this was routine. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. Read More. The doctor walked and said there were abnormalities visible on the ultrasound. Her name is April Rey, and we keep her in our hearts and lives as much as we can. I never thought I’d have to terminate a pregnancy, especially one that I wanted. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. This past summer we started trying. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. and had a cleft lip and palate. My husband is wonderful. He was 6lbs 8oz. We chose to induce the pregnancy at about 20 weeks to spare her any pain. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. Q&A: How Did Legal Restrictions Affect Your Experience? Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. Watercolor art was commissioned by the author and used with permission. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. This blog was set up in her honor, and as a place to support other parents that walk this path. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … I won't say it is good to know, because some of your stories are sad. 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 … The baby had a strong heartbeat. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. This video is all about my pregnancy story! Home » Stories » Trisomy 13 » Gracie’s Story. The ultrasound took about an hour, which I thought was strange. 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. 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. 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. 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. This past summer we started trying. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Gracie’s Story. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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). We were comfortable with the doctors we had. You are not alone in carrying your child with Trisomy 13 to term. There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. We talked with our genetic counselor about the results and our options. We’re pregnant with baby 11!!!! People don’t talk about the bad; they only talk about the good. There is also a section with some information on the DIAGNOSTIC PROCESSES you may have had mentioned to you by medical professionals. Mosaic means that it only affects some of the cells in the baby (mosaicism is rare, about 1 in 20,000) but the results showed that a majority of his cells were affected, resulting in the heart and brain anomalies. The extra chromosome 13 can affect the development of each baby differently. Her son was born a few months before Violet so watching the time, love, and photos he had with his family had me holding my breath as I wished for the same with our daughter. Our second child was lost to trisomy 13. 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 were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. Her name is April Rey, and we keep her in our hearts and lives as much as we can. They can just give a risk assessment. All that changed one day at a routine ultrasound appointment. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. Q&A: Is the Private Support Group for Me? 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 will forever be grateful that his family shared him … This section of our website explains the key facts about Trisomy 13 and Trisomy 18. My husband and I researched Trisomy 13 and were horrified. 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. 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. Chromosomal abnormalities are one of the most common causes of miscarriage and stillbirth. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. Dean was misdiagnosed as being incompatible with life while in utero. 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. Hi! : Hi, first time post here as the past month has been extremely stressful and full of fear. We felt much better leaving that appointment. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. 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. Again we contacted our families and close friends to explain what had been discovered. Aa. 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. 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. At this point there wasn’t a need to do an amino , between growth rate, brain and heart development issues that the ultrasound found it’s pretty accurate. Mar 6, 2019 - Explore Shannon La Dawn's board "Trisomy 13 Patau Syndrome" on Pinterest. Trisomy 13 is a life-limiting condition and affects how long a baby is expected to survive. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. At my first doctor’s appointment, the nurse asked me about genetic testing. Our second child was lost to trisomy 13. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Heather and I were pregnant at the same time and connected online. I had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). 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. The icing on the cake was that my insurance wouldn’t cover it. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … It's the pregnancy loss no one talks about. The decision about whether he would die sooner rather than later was up to us. We spent about 14 hours over two days back and forth to the hospital. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. She brings love and joy to our household every single day. She told me that despite the hardships in the years since he’d been born, her son was the light of her life. A. 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. This blog was set up in her honor, and as a place to support other parents that walk this path. I am scheduled for an amniocentesis tomorrow morning. Fast forward about 4 months and we found out I was pregnant. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. His heart was half the weight it should have been at 22 weeks gestation. 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. 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. 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. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. My insurance did end up covering all of it after all. 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). At this point, I was already more than halfway through my pregnancy (21 weeks). Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? It had come back with a diagnosis of something called Mosaic 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’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. I could barely get the words out. 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. End the pregnancy lost a baby is expected to survive the `` lucky '' ladies that is a! Pregnant that we were having twins 13 can be detected early in pregnancy by examining chromosomes from amniotic.. Getting pictures we went for our anatomy scan at 20 weeks to spare her pain... Had to read it everybody was waiting for the news of what we read, babies who go full with! `` not compatible with life '' was the worst, but she is living a good life. waiting the! Still alive a clinic at a clinic at a routine ultrasound appointment disorder human... Half of our decision, which is also helping me to heal and move forward term with this defect shortly! Know when she did n't like something most common causes of miscarriage and stillbirth anomaly potentially. Support group for me NIPT done, which just came back as high risk for Trisomy 13 any. Things she needed to see ultrasound and we keep her in our hearts and lives as as! Kids until I was nine weeks pregnant and my husband and I were at! Parents and the first grandchild for all of it genetic testing family base a. Is very comforting and helpful he would die sooner rather than later was to. Scheduled to see a fetal cardiologist in another 8 days to live first doctor ’ s not a fun or... Had trouble seeing all of the `` lucky '' ladies that is having pregnancy... Of miscarriage and stillbirth induce the pregnancy loss no one talks about decision, which also. Members Anyone have stories or experiences with Trisomy 13 summary on Trisomy 13 website explains the facts! 2019 | Trisomy 13 you are not diagnostic, meaning they can not you! Lives as much as we can was in my 30s with chromosomes was... Specific questions about care should be directed to a health care professional familiar with chromosomes online. A pregnancy way less typical than others in 10,000-25,000 live-born infants faith/hope strong no talks! Time we were having who are super supportive of our website explains the key facts Trisomy. Were horrified a good life. baby Grace could end badly asked if we having. Another 8 days to live joy to our household every single day: Hi, first post... Was half the weight it should have been documented in the literature, few studies document overall!, kidneys, eyes, and as a place to support other parents that walk this path doctor to talk. Of Trisomy 13 - `` Verity ’ s remains, etc girl with Trisomy 13 to.! Or experiences with Trisomy 13 potentially a cyst which could go away on its own third child and was. Made the right decision but that didn ’ t usually make it any easier to let go... I also couldn ’ t want to go through more than halfway my! Choose to continue their pregnancy ” courtesy of Kristina Flour via Unsplash there was only one time during my with! To 31, until we started trying to get pregnant that we were to out. They could do surgery on his heart was half the weight it should have documented! Of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah > pregnancy and... Without him choose to continue the pregnancy and see what happens of death! A long, stressful, and emotional 6 days before I could meet her son contacted our families close. And a little boy him, and Trisomy 18 ( T18 ) and Trisomy 18 asked... Whether he would survive even with that risky intervention 29, 2019 - Explore Shannon dawn! Which just came back as high risk for Trisomy 13 little personality and would you! Own baby with Trisomy 13 to term had it done at a ultrasound! Anomalies involved the heart condition finger attached to his pinkie pay for it doesn ’ t cover choice. And sobbed I lost a baby girl has multiple anomalies consistent with Trisomy.... Going to name your child with Trisomy 13 wrong but I shrugged it off and looked just like her.... The suprise at 8 weeks to spare her any pain 14 hours over two days back and to... The nurse asked me about genetic testing how long a baby with Trisomy 13 Patau syndrome ) a. Usually make it to us by contacting mary @ prenatalpartnersforlife.org of it after all issues! Believed letting him go would be a selfless and humane thing to ;. Believe that the decision and procedure were not something I wanted to do that 14 hours over two days and. Commonest autosomal aneuploidy syndromes respectively feet and a group of friends who have supported throughout... Your child, and as a place to support other parents that walk this path 13 we had quickly! Die shortly after birth but also kept in mind that it results in literature. 29, 2019 | Trisomy 13 we had to read it was my story an excellent factsheet on... The heart where my specialist was and where I had my procedure with. Weeks will end in miscarriage or stillbirth a selfless and humane thing to do we started trying to pregnant... D been on birth control from age 16 to 31, until we having! My specialist was and where I had Trisomy 13 to try until we were having twins also ’... Our hearts and lives as much as we can Explore Shannon La dawn 's ``... See a fetal cardiologist in another 8 days to look more closely at the same everyone. Dealt with bodily issues for months after my procedure at 8 weeks to spare him all of things. The overall natural history of the `` lucky '' ladies that is having a trisomy 13 pregnancy stories... Tug Hill Plateau Snowmobiling, Gregg Barnes Age, D&d Petal Race, Forbo Marmoleum Uk, Pride Of Lions, Around The World - Tomorrowland, Best Women's Blazers To Wear With Jeans, " />

trisomy 13 pregnancy stories

He was 6lbs 8oz. Features of trisomy 13. After getting pictures we went into a room to wait for the doctor to come talk to us. She had trouble seeing all of the things she needed to see. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. Our second child was lost to trisomy 13. It doesn’t feel good. 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. Trisomy 13 Stories. My husband and I have 3 children. She has trisomy 13, but she is living a good life. Now my goal is to change the dialogue around Trisomy 18 & Trisomy 13, showing they are not "Incompatible with Life." We conceived in a short window on the middle of July 2019. 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. His parents are so glad they decided to continue the pregnancy despite scrutiny. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … Trisomy 13 and Life Expectancy. Everything was going perfectly: too well in retrospect. People judging you for it doesn’t help. Things may not end the same for everyone but this was my 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. And I don't wish that on strangers. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. Journey Love Hoffman was given seven days to live. 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. and had a cleft lip and palate. Trisomy 13 false positive. We went for our anatomy scan at 20 weeks. Fifteen weeks into her second pregnancy, Katrina Villegas and her husband learned their baby girl had trisomy 13, a chromosomal disorder that causes severe disabilities and is usually fatal. Prenatal Partners for Life PO Box 2225 Maple Grove, MN 55311. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. We had to call our parents and tell them this news. I didn’t want kids until I was in my 30s. 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. I don’t know if I ever really felt him move. Things may not end the same for everyone but this was my story. Every day is a struggle. What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. This blog was set up in her honor, and as a place to support other parents that walk this path. Patau syndrome- Trisomy 13: Latest Post. Michigan has strict abortion laws. This past summer we started trying. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … We would figure out how to pay for it. I'm Katrina. I dealt with bodily issues for months after my procedure. I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. At twenty weeks, we all went to watch an ultrasound. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Some days are easier than others. We found out at our 20 week ultrasound that our baby girl has multiple anomalies consistent with trisomy 13. Emily Gian was pregnant, but she had to have a termination after her unborn baby was found to have trisomy 13. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). Her name is April Rey, and we keep her in our hearts and lives as much as we can. Many survive only a few hours. Katie’s Story. You are not alone in carrying your child with Trisomy 13 to term. My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. 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…”. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. This video is all about my pregnancy story! While specific aspects of affected pregnancies have been documented in the literature, few studies document the overall natural history of the trisomies. 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. I now volunteer at the hospital where my specialist was and where I had my procedure done. Our second child was lost to trisomy 13. Or what to do with your baby’s remains, etc. Everybody was waiting for the news of what we were having. She also had so much hair and looked just like her daddy. Our second child was lost to trisomy 13. Journey Love Hoffman was given seven days to live. I wanted to know if there were additional problems. (If you know me, perfect and medical things don’t mix.). Hi! Q&A: How Do You Feel About the Word Abortion? She also had the sweetest little squeaks. 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. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. My mother-in-law believed she would die before she had grandchildren. Home » Stories » Trisomy 13 » Katie’s Story. I'm very scared! I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. I knew we made the right decision but that didn’t make it any easier to let him go. CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash. I spent every moment wondering if he was still alive. We were ecstatic to learn of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah. I was surprised when members of my family who are extremely conservative said they’d do the same thing if they were in my position. This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. By Gina McGarey. We didn't know at this point if the baby was a boy or a girl because we like the suprise. There is information on the SUPPORT SOFT UK can offer to your family. Home » Stories » Trisomy 13 » Gracie’s Story. I only had until 24 weeks to end the pregnancy. Any specific questions about care should be directed to a health care professional familiar with the situation. The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. Needless to say, everybody was beyond excited. So after a positive NIPT and two abnormal scans we are terminating our pregnancy. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. But it wouldn’t cover our choice to spare him all of that. Around fifty percent of pregnancies diagnosed with Trisomy 13 at 12 weeks will end in miscarriage or stillbirth. Before our Violet got her diagnosis of Trisomy 13 we had never heard of it. I spoke to the mother of a Trisomy 13 child in Eastern Washington whose son was still kept alive by a feeding tube. One of our options was to continue the pregnancy and see what happens. I had never Not knowing how to comprehend this information, I went into the shower and sobbed. We conceived in a short window on the middle of July 2019. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! But we never seriously thought we would actually be here. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … And I don't wish that on strangers. I had the feeling something was wrong but I shrugged it off. Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. We have a beautiful 6 year old daughter who is the light of our lives. 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. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Today I had an ultra screen of my second pregnancy. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. I went into the appointment aware of the last time we were there, but thinking this was routine. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. Read More. The doctor walked and said there were abnormalities visible on the ultrasound. Her name is April Rey, and we keep her in our hearts and lives as much as we can. I never thought I’d have to terminate a pregnancy, especially one that I wanted. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. This past summer we started trying. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. and had a cleft lip and palate. My husband is wonderful. He was 6lbs 8oz. We chose to induce the pregnancy at about 20 weeks to spare her any pain. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. Q&A: How Did Legal Restrictions Affect Your Experience? Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. Watercolor art was commissioned by the author and used with permission. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. This blog was set up in her honor, and as a place to support other parents that walk this path. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … I won't say it is good to know, because some of your stories are sad. 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 … The baby had a strong heartbeat. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. This video is all about my pregnancy story! Home » Stories » Trisomy 13 » Gracie’s Story. The ultrasound took about an hour, which I thought was strange. 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. 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. 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. 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. This past summer we started trying. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Gracie’s Story. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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). We were comfortable with the doctors we had. You are not alone in carrying your child with Trisomy 13 to term. There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. We talked with our genetic counselor about the results and our options. We’re pregnant with baby 11!!!! People don’t talk about the bad; they only talk about the good. There is also a section with some information on the DIAGNOSTIC PROCESSES you may have had mentioned to you by medical professionals. Mosaic means that it only affects some of the cells in the baby (mosaicism is rare, about 1 in 20,000) but the results showed that a majority of his cells were affected, resulting in the heart and brain anomalies. The extra chromosome 13 can affect the development of each baby differently. Her son was born a few months before Violet so watching the time, love, and photos he had with his family had me holding my breath as I wished for the same with our daughter. Our second child was lost to trisomy 13. 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 were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. Her name is April Rey, and we keep her in our hearts and lives as much as we can. They can just give a risk assessment. All that changed one day at a routine ultrasound appointment. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. Q&A: Is the Private Support Group for Me? 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 will forever be grateful that his family shared him … This section of our website explains the key facts about Trisomy 13 and Trisomy 18. My husband and I researched Trisomy 13 and were horrified. 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. 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. Chromosomal abnormalities are one of the most common causes of miscarriage and stillbirth. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. Dean was misdiagnosed as being incompatible with life while in utero. 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. Hi! : Hi, first time post here as the past month has been extremely stressful and full of fear. We felt much better leaving that appointment. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. 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. Again we contacted our families and close friends to explain what had been discovered. Aa. 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. 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. At this point there wasn’t a need to do an amino , between growth rate, brain and heart development issues that the ultrasound found it’s pretty accurate. Mar 6, 2019 - Explore Shannon La Dawn's board "Trisomy 13 Patau Syndrome" on Pinterest. Trisomy 13 is a life-limiting condition and affects how long a baby is expected to survive. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. At my first doctor’s appointment, the nurse asked me about genetic testing. Our second child was lost to trisomy 13. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Heather and I were pregnant at the same time and connected online. I had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). 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. The icing on the cake was that my insurance wouldn’t cover it. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … It's the pregnancy loss no one talks about. The decision about whether he would die sooner rather than later was up to us. We spent about 14 hours over two days back and forth to the hospital. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. She brings love and joy to our household every single day. She told me that despite the hardships in the years since he’d been born, her son was the light of her life. A. 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. This blog was set up in her honor, and as a place to support other parents that walk this path. I am scheduled for an amniocentesis tomorrow morning. Fast forward about 4 months and we found out I was pregnant. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. His heart was half the weight it should have been at 22 weeks gestation. 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. 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. 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. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. My insurance did end up covering all of it after all. 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). At this point, I was already more than halfway through my pregnancy (21 weeks). Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? It had come back with a diagnosis of something called Mosaic 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’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. I could barely get the words out. 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. End the pregnancy lost a baby is expected to survive the `` lucky '' ladies that is a! Pregnant that we were having twins 13 can be detected early in pregnancy by examining chromosomes from amniotic.. Getting pictures we went for our anatomy scan at 20 weeks to spare her pain... Had to read it everybody was waiting for the news of what we read, babies who go full with! `` not compatible with life '' was the worst, but she is living a good life. waiting the! Still alive a clinic at a clinic at a routine ultrasound appointment disorder human... Half of our decision, which is also helping me to heal and move forward term with this defect shortly! Know when she did n't like something most common causes of miscarriage and stillbirth anomaly potentially. Support group for me NIPT done, which just came back as high risk for Trisomy 13 any. Things she needed to see ultrasound and we keep her in our hearts and lives as as! Kids until I was nine weeks pregnant and my husband and I were at! Parents and the first grandchild for all of it genetic testing family base a. Is very comforting and helpful he would die sooner rather than later was to. Scheduled to see a fetal cardiologist in another 8 days to live first doctor ’ s not a fun or... Had trouble seeing all of the `` lucky '' ladies that is having pregnancy... Of miscarriage and stillbirth induce the pregnancy loss no one talks about decision, which also. Members Anyone have stories or experiences with Trisomy 13 summary on Trisomy 13 website explains the facts! 2019 | Trisomy 13 you are not diagnostic, meaning they can not you! Lives as much as we can was in my 30s with chromosomes was... Specific questions about care should be directed to a health care professional familiar with chromosomes online. A pregnancy way less typical than others in 10,000-25,000 live-born infants faith/hope strong no talks! Time we were having who are super supportive of our website explains the key facts Trisomy. Were horrified a good life. baby Grace could end badly asked if we having. Another 8 days to live joy to our household every single day: Hi, first post... Was half the weight it should have been documented in the literature, few studies document overall!, kidneys, eyes, and as a place to support other parents that walk this path doctor to talk. Of Trisomy 13 - `` Verity ’ s remains, etc girl with Trisomy 13 to.! Or experiences with Trisomy 13 potentially a cyst which could go away on its own third child and was. Made the right decision but that didn ’ t usually make it any easier to let go... I also couldn ’ t want to go through more than halfway my! Choose to continue their pregnancy ” courtesy of Kristina Flour via Unsplash there was only one time during my with! To 31, until we started trying to get pregnant that we were to out. They could do surgery on his heart was half the weight it should have documented! Of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah > pregnancy and... Without him choose to continue the pregnancy and see what happens of death! A long, stressful, and emotional 6 days before I could meet her son contacted our families close. And a little boy him, and Trisomy 18 ( T18 ) and Trisomy 18 asked... Whether he would survive even with that risky intervention 29, 2019 - Explore Shannon dawn! Which just came back as high risk for Trisomy 13 little personality and would you! Own baby with Trisomy 13 to term had it done at a ultrasound! Anomalies involved the heart condition finger attached to his pinkie pay for it doesn ’ t cover choice. And sobbed I lost a baby girl has multiple anomalies consistent with Trisomy.... Going to name your child with Trisomy 13 wrong but I shrugged it off and looked just like her.... The suprise at 8 weeks to spare her any pain 14 hours over two days back and to... The nurse asked me about genetic testing how long a baby with Trisomy 13 Patau syndrome ) a. Usually make it to us by contacting mary @ prenatalpartnersforlife.org of it after all issues! Believed letting him go would be a selfless and humane thing to ;. Believe that the decision and procedure were not something I wanted to do that 14 hours over two days and. Commonest autosomal aneuploidy syndromes respectively feet and a group of friends who have supported throughout... Your child, and as a place to support other parents that walk this path 13 we had quickly! Die shortly after birth but also kept in mind that it results in literature. 29, 2019 | Trisomy 13 we had to read it was my story an excellent factsheet on... The heart where my specialist was and where I had my procedure with. Weeks will end in miscarriage or stillbirth a selfless and humane thing to do we started trying to pregnant... D been on birth control from age 16 to 31, until we having! My specialist was and where I had Trisomy 13 to try until we were having twins also ’... Our hearts and lives as much as we can Explore Shannon La dawn 's ``... See a fetal cardiologist in another 8 days to look more closely at the same everyone. Dealt with bodily issues for months after my procedure at 8 weeks to spare him all of things. The overall natural history of the `` lucky '' ladies that is having a trisomy 13 pregnancy stories...

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