Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? My husband and I researched Trisomy 13 and were horrified. I wanted to know if there were additional problems. There was only one time during my pregnancy that I thought I might have. Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! The baby had a strong heartbeat. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … He had rocker bottom feet and a little finger attached to his pinkie. One of our options was to continue the pregnancy and see what happens. 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. I won't say it is good to know, because some of your stories are sad. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. It’s not a fun experience or an easy decision no matter how you get there. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. The extra chromosome 13 can affect the development of each baby differently. Journey Love Hoffman was given seven days to live. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. 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. My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. I couldn’t have gotten through this without him. Hi! Katie’s Story. Momma_37. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Home » Stories » Trisomy 13 » Gracie’s Story. This blog was set up in her honor, and as a place to support other parents that walk this path. Features of trisomy 13. We were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart. At twenty weeks, we all went to watch an ultrasound. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. You are not alone in carrying your child with Trisomy 13 to term. The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. From what we read, babies who go full term with this face excruciating medical problems and usually die. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. 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). Fast forward about 4 months and we found out I was pregnant. 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. I paid a grand total of $120 and still can’t believe it. Fast forward about 4 months and we found out I was pregnant. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. 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. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. Fast forward about 4 months and we found out I was pregnant. We conceived in a short window on the middle of July 2019. I dealt with bodily issues for months after my procedure. Our other option was to terminate the pregnancy. With our first pregnancy, we tried for 1.5 years to get pregnant, and needed fertility help. Again we contacted our families and close friends to explain what had been discovered. Our second child was lost to trisomy 13. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Our second child was lost to trisomy 13. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … I'm Katrina. Can you tell me a bit more about her official diagnosis of Trisomy 13? Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. 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. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. This video is all about my pregnancy story! You are not alone in carrying your child with Trisomy 13 to term. 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. We felt much better leaving that appointment. By Gina McGarey. Emotionally, that was too much for me. But it wouldn’t cover our choice to spare him all of that. We’re pregnant with baby 11!!!! The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. The doctor walked and said there were abnormalities visible on the ultrasound. My husband and I have 3 children. 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. We believed letting him go would be a selfless and humane thing to do. This blog was set up in her honor, and as a place to support other parents that walk this path. Those who do typically have profound physical and developmental problems. I'm very scared! We were ecstatic to learn of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah. 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. And I don't wish that on strangers. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. 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. She had trouble seeing all of the things she needed to see. She brings love and joy to our household every single day. Her name is April Rey, and we keep her in our hearts and lives as much as we can. 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. Even at that point in time, I wouldn’t have known if he was alive or not. I don’t know if I ever really felt him move. I'm Katrina. He had rocker bottom feet and a little finger attached to his pinkie. The technician seemed abnormally quiet to me. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. I had the feeling something was wrong but I shrugged it off. Dean was misdiagnosed as being incompatible with life while in utero. And I don't wish that on strangers. 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?!). Getting heartbreaking news like this is terrible enough, but then we had to quickly make this decision. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. We talked with our genetic counselor about the results and our options. It doesn’t feel good. CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash. and had a cleft lip and palate. 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. 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. 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. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. It occurs in 1 in 10,000 live births. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. Her smile and laugh light up our world." 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. Read More. I am assuming you got a non-invasive prenatal test (a blood test) where they look for Trisomy 21, 18, and 13 (among other things). Or what to do with your baby’s remains, etc. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. The amnio was not nearly as bad as I expected. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). Everything was going perfectly: too well in retrospect. This statistic doesn't reflect the babies with trisomies … 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. She also had the sweetest little squeaks. My baby had been trisomy 13 - and a little boy. Babies don’t usually make it to birth with this diagnosis. Many survive only a few hours. 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. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … Home » Stories » Trisomy 13 » Gracie’s Story. 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. I believe it is important for medical providers to treat the symptoms and not the label. I told my husband, she either has the worst bed side manor ever, or something is seriously wrong, as she proceeded with cold silence!!!! Questions about care should be directed to a health care professional familiar with the was... Were problems with the baby us it was heartbreaking and horrible to relive over and over.! A clinic at a routine ultrasound appointment t make it to us that he was alive. Bad as I expected support groups I spoke to the mother of a Trisomy 13 story to share please. 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trisomy 13 pregnancy stories

My husband and I have 3 children. 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. I could barely get the words out. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. 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. 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. I never thought I’d have to terminate a pregnancy, especially one that I wanted. 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. What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. 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. The post-termination pathology confirmed the Mosaic Trisomy 13 diagnosis and hypoplastic left heart syndrome (HLHS). She told me that despite the hardships in the years since he’d been born, her son was the light of her life. 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. I’m going to be doing a regular vlog of mine and my daughter Darcies journey with trisomy 13. Hi! A. They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. This blog was set up in her honor, and as a place to support other parents that walk this path. 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 was hard and frustrating and felt like it took an eternity. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Trisomy 13 false positive. Needless to say, everybody was beyond excited. Trisomy 13 and Life Expectancy. 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. We went for our anatomy scan at 20 weeks. I had never by partnerslife9642 | Apr 29, 2019 | Trisomy 13. He wasn’t going to live. This past summer we started trying. The ultrasound took about an hour, which I thought was strange. I didn’t want kids until I was in my 30s. : Hi, first time post here as the past month has been extremely stressful and full of fear. Dawn was pregnant with her third child and everything was going great. 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. We had to call our parents and tell them this news. 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. She offered to stop by for a visit in the coming weeks so I could meet her son. The brain anomaly was potentially a cyst which could go away on its own. 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. Not knowing how to comprehend this information, I went into the shower and sobbed. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. It stays with you. He was 6lbs 8oz. I was advised to terminate as told it was trisomy 13 or 18 and incompatible with life but I refused till I knew more info. (We found out we are not). We have a beautiful 6 year old daughter who is the light of our lives. By Gina McGarey. 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. After genetic testing and meeting with MFM, it was explained to us that it was “bad luck”. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. We found out at our 20 week ultrasound that our baby girl has multiple anomalies consistent with trisomy 13. I couldn’t bear continuing with the pregnancy, having people touch my belly and having to explain that he wasn’t going to survive. and had a cleft lip and palate. Our second child was lost to trisomy 13. This video is all about my pregnancy story! Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death and with severe disability among survivors. It was heartbreaking and horrible to relive over and over again. Prenatal Partners for Life PO Box 2225 Maple Grove, MN 55311. Things may not end the same for everyone but this was my story. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. We didn't know at this point if the baby was a boy or a girl because we like the suprise. 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. Today I had an ultra screen of my second pregnancy. Dawn: Misdiagnosis . 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. 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. 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. 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. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. I knew we made the right decision but that didn’t make it any easier to let him go. Trisomy 13 Stories. This blog was set up in her honor, and as a place to support other parents that walk this path. Trisomy 13 false positive. After getting pictures we went into a room to wait for the doctor to come talk to us. This past summer we started trying. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … At my first doctor’s appointment, the nurse asked me about genetic testing. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death and with severe disability among survivors. SOFT US provide an excellent factsheet summary on Trisomy 13. Some days are easier than others. Of these, Trisomy 13 is the most rare and the most severe in that it results in the shortest life spans. 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. A. At twenty weeks, we all went to watch an ultrasound. His life was beautiful and his smile and eyes had me no longer afraid of meeting my own baby with Trisomy 13. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. The procedure was brutal, extremely painful and nothing anybody would want to go through more than once. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. Every day is a struggle. There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. I'm Katrina. 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…”. What is Trisomy 13? 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. In 2013 my husband and I lost a baby girl with trisomy 13. Michigan has strict abortion laws. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. I now volunteer at the hospital where my specialist was and where I had my procedure done. 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. Dawn: Misdiagnosis. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. This was a constant reminder of our loss. 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. I will forever be grateful that his family shared him … 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 also couldn’t endure the thought of giving birth, holding him, and then having to let him go. Our second child was lost to trisomy 13. This time around, we knew that could happen again. Until, it took almost 2 hrs!!! We would figure out how to pay for it. So after a positive NIPT and two abnormal scans we are terminating our 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. This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. Watercolor art was commissioned by the author and used with permission. Chromosomal abnormalities are one of the most common causes of miscarriage and stillbirth. 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. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … 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 … We spent about 14 hours over two days back and forth to the hospital. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. Her name is April Rey, and we keep her in our hearts and lives as much as we can. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. At this point, I was already more than halfway through my pregnancy (21 weeks). Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? My husband and I researched Trisomy 13 and were horrified. I wanted to know if there were additional problems. There was only one time during my pregnancy that I thought I might have. Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! The baby had a strong heartbeat. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … He had rocker bottom feet and a little finger attached to his pinkie. One of our options was to continue the pregnancy and see what happens. 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. I won't say it is good to know, because some of your stories are sad. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. It’s not a fun experience or an easy decision no matter how you get there. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. The extra chromosome 13 can affect the development of each baby differently. Journey Love Hoffman was given seven days to live. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. 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. My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. I couldn’t have gotten through this without him. Hi! Katie’s Story. Momma_37. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Home » Stories » Trisomy 13 » Gracie’s Story. This blog was set up in her honor, and as a place to support other parents that walk this path. Features of trisomy 13. We were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart. At twenty weeks, we all went to watch an ultrasound. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. You are not alone in carrying your child with Trisomy 13 to term. The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. From what we read, babies who go full term with this face excruciating medical problems and usually die. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. 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). Fast forward about 4 months and we found out I was pregnant. 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. I paid a grand total of $120 and still can’t believe it. Fast forward about 4 months and we found out I was pregnant. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. 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. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. Fast forward about 4 months and we found out I was pregnant. We conceived in a short window on the middle of July 2019. I dealt with bodily issues for months after my procedure. Our other option was to terminate the pregnancy. With our first pregnancy, we tried for 1.5 years to get pregnant, and needed fertility help. Again we contacted our families and close friends to explain what had been discovered. Our second child was lost to trisomy 13. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. Our second child was lost to trisomy 13. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … I'm Katrina. Can you tell me a bit more about her official diagnosis of Trisomy 13? Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. 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. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. This video is all about my pregnancy story! You are not alone in carrying your child with Trisomy 13 to term. 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. We felt much better leaving that appointment. By Gina McGarey. Emotionally, that was too much for me. But it wouldn’t cover our choice to spare him all of that. We’re pregnant with baby 11!!!! The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. The doctor walked and said there were abnormalities visible on the ultrasound. My husband and I have 3 children. 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. We believed letting him go would be a selfless and humane thing to do. This blog was set up in her honor, and as a place to support other parents that walk this path. Those who do typically have profound physical and developmental problems. I'm very scared! We were ecstatic to learn of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah. 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. And I don't wish that on strangers. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. 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. She had trouble seeing all of the things she needed to see. She brings love and joy to our household every single day. Her name is April Rey, and we keep her in our hearts and lives as much as we can. 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. Even at that point in time, I wouldn’t have known if he was alive or not. I don’t know if I ever really felt him move. I'm Katrina. He had rocker bottom feet and a little finger attached to his pinkie. The technician seemed abnormally quiet to me. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. I had the feeling something was wrong but I shrugged it off. Dean was misdiagnosed as being incompatible with life while in utero. And I don't wish that on strangers. 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?!). Getting heartbreaking news like this is terrible enough, but then we had to quickly make this decision. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. We talked with our genetic counselor about the results and our options. It doesn’t feel good. CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash. and had a cleft lip and palate. 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. 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. 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. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. It occurs in 1 in 10,000 live births. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. Her smile and laugh light up our world." 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. Read More. I am assuming you got a non-invasive prenatal test (a blood test) where they look for Trisomy 21, 18, and 13 (among other things). Or what to do with your baby’s remains, etc. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. The amnio was not nearly as bad as I expected. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). Everything was going perfectly: too well in retrospect. This statistic doesn't reflect the babies with trisomies … 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. She also had the sweetest little squeaks. My baby had been trisomy 13 - and a little boy. Babies don’t usually make it to birth with this diagnosis. Many survive only a few hours. 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. 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