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. My husband and I didn’t have any risk factors and, like any first-time pregnant woman who didn’t understand what was being asked of me, I figured we didn’t need testing. Or what to do with your baby’s remains, etc. Trisomy 13 false positive. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Gracie’s Story. They can just give a risk assessment. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … 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. This past summer we started trying. Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! We were comfortable with the doctors we had. Katie’s Story. 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. This blog was set up in her honor, and as a place to support other parents that walk this path. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. We have made the decision to not continue on with the pregnancy… There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. Trisomy 13 /18 (Support Group MALAYSIA) My aim in creating this group is to bridge any available Support Groups and learned parents in Malaysia, on a mission to come to the aid of those grieving mothers and fathers (be they viewpoints from a medical perspective, to the soothing words and prayers of comfort) whose precious one has been diagnosed as having a Trisomy 13/18 genetic condition. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … 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. We had to call our parents and tell them this news. She brings love and joy to our household every single day. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. Many survive only a few hours. 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. 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. Hi! 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 knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. 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. From what we read, babies who go full term with this face excruciating medical problems and usually die. Any specific questions about care should be directed to a health care professional familiar with the situation. CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash. I didn’t want kids until I was in my 30s. At twenty weeks, we all went to watch an ultrasound. 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 never thought I’d have to terminate a pregnancy, especially one that I wanted. Until, it took almost 2 hrs!!! Her name is April Rey, and we keep her in our hearts and lives as much as we can. I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. Emotionally, that was too much for me. 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. 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 … A. We found out at our 20 week ultrasound that our baby girl has multiple anomalies consistent with trisomy 13. This video is all about my pregnancy story! I now volunteer at the hospital where my specialist was and where I had my procedure done. 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. and had a cleft lip and palate. After getting pictures we went into a room to wait for the doctor to come talk to us. Babies don’t usually make it to birth with this diagnosis. 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. It’s difficult on top of already being crazy hormonal and heartbroken. The decision and procedure were not something I wanted to do; they were something I had to do. My husband and I have 3 children. 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. We would figure out how to pay for it. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. A. 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 have made the decision to not continue on with the pregnancy… There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. Today I had an ultra screen of my second pregnancy. We chose to induce the pregnancy at about 20 weeks to spare her any pain. He had rocker bottom feet and a little finger attached to his pinkie. This blog was set up in her honor, and as a place to support other parents that walk this path. I’m going to counsel other women going through the same situation, share my story at conferences, and work with doctors and nurses in training to give them a patient’s perspective. This time around, we knew that could happen again. Trisomy 13 false positive. Gracie’s Story. This was a constant reminder of our loss. I spoke to the mother of a Trisomy 13 child in Eastern Washington whose son was still kept alive by a feeding tube. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Everybody was waiting for the news of what we were having. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. Our second child was lost to trisomy 13. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? by partnerslife9642 | Apr 29, 2019 | Trisomy 13. Again we contacted our families and close friends to explain what had been discovered. 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. Of these, Trisomy 13 is the most rare and the most severe in that it results in the shortest life spans. I don’t know if I ever really felt him move. We talked with our genetic counselor about the results and our options. Journey Love Hoffman was given seven days to live. I'm very scared! And I don't wish that on strangers. 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. 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. I couldn’t have gotten through this without him. This blog was set up in her honor, and as a place to support other parents that walk this path. You are not alone in carrying your child with Trisomy 13 to term. It was heartbreaking and horrible to relive over and over again. The amnio was not nearly as bad as I expected. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. I won't say it is good to know, because some of your stories are sad. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. 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. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. We waited to try until we were ready, but also kept in mind that it might take a year or two to conceive. by partnerslife9642 | Apr 29, 2019 | 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. A. They couldn’t see everything because the baby wouldn’t move much, but the anomalies involved the heart and brain. Not knowing how to comprehend this information, I went into the shower and sobbed. Q&A: How Do You Feel About the Word Abortion? I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … Things may not end the same for everyone but this was my story. Fast forward about 4 months and we found out I was pregnant. He wasn’t going to live. I dealt with bodily issues for months after my procedure. Prenatal Partners for Life PO Box 2225 Maple Grove, MN 55311. But we never seriously thought we would actually be here. It causes severe neurological and heart defects; approximately 80% of children born with this defect die shortly after birth. I didn’t want kids until I was in my 30s. The technician seemed abnormally quiet to me. We’re pregnant with baby 11!!!! We chose to induce the pregnancy at about 20 weeks to spare her any pain. Read More. Before our Violet got her diagnosis of Trisomy 13 we had never heard of it. What is Trisomy 13? The baby had a strong heartbeat. Dawn: Misdiagnosis. The icing on the cake was that my insurance wouldn’t cover it. The ultrasound took about an hour, which I thought was strange. My husband and I researched Trisomy 13 and were horrified. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. People don’t talk about the bad; they only talk about the good. In 2013 my husband and I lost a baby girl with trisomy 13. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. 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. They wanted us to visit a specialist. Needless to say, everybody was beyond excited. I couldn’t bear continuing with the pregnancy, having people touch my belly and having to explain that he wasn’t going to survive. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. She had trouble seeing all of the things she needed to see. What Lawmakers Get Wrong About “Late-Term” Abortions, AP: Women seek abortions out of state amid restrictions, “No regret”: SC woman shares story of abortion. So after a positive NIPT and two abnormal scans we are terminating our pregnancy. 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…”. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. Momma_37. Those who do typically have profound physical and developmental problems. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. He was 6lbs 8oz. My husband is wonderful. Journey Love Hoffman was given seven days to live. I’m going to be doing a regular vlog of mine and my daughter Darcies journey with trisomy 13. Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. Hi! 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. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. See more ideas about trisomy 13, patau syndrome, syndrome. I told my husband, she either has the worst bed side manor ever, or something is seriously wrong, as she proceeded with cold silence!!!! This blog was set up in her honor, and as a place to support other parents that walk this path. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. I believe that the decision about whether my little boy lived or died was already determined for me. Our second child was lost to trisomy 13. 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). and had a cleft lip and palate. It's the pregnancy loss no one talks about. 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. 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. 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. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). You are not alone in carrying your child with Trisomy 13 to term. My husband and I have 3 children. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. This statistic doesn't reflect the babies with trisomies … I'm Katrina. The most commonly occuring trisomies where babies can survive until birth include Trisomy 13, Trisomy 18, and Trisomy 21 or Down syndrome. 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. She told me that despite the hardships in the years since he’d been born, her son was the light of her life. While specific aspects of affected pregnancies have been documented in the literature, few studies document the overall natural history of the trisomies. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. This past summer we started trying. It's rare. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. I believe it is important for medical providers to treat the symptoms and not the label. It was hard and frustrating and felt like it took an eternity. Using my voice, and sharing the stories of others, I speak up for those who can't speak for themselves. 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. Dean was misdiagnosed as being incompatible with life while in utero. 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. I didn’t want kids until I was in my 30s. We conceived in a short window on the middle of July 2019. I spent that half hour looking at information about breastfeeding and we talked about who we would call first and tell. I had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). Heather and I were pregnant at the same time and connected online. Everything was going perfectly: too well in retrospect. We were sent for an early ultrasound at 8 weeks to verify dates, something […] Baby Grace. Trisomy refers to three copies of a chromosome instead of the normal two and in Trisomy 13 there is the presence of an extra #13 chromosome.Select a .pdf download below He was 6lbs 8oz. This section of our website explains the key facts about Trisomy 13 and Trisomy 18. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. My husband and I have 3 children. Q&A: Is the Private Support Group for Me? Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. The post-termination pathology confirmed the Mosaic Trisomy 13 diagnosis and hypoplastic left heart syndrome (HLHS). Her smile and laugh light up our world." Watercolor art was commissioned by the author and used with permission. : Hi, first time post here as the past month has been extremely stressful and full of fear. The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. Our second child was lost to trisomy 13. There was only one time during my pregnancy that I thought I might have. I spent every moment wondering if he was still alive. By Gina McGarey. 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. I went into the appointment aware of the last time we were there, but thinking this was routine. The decision about whether he would die sooner rather than later was up to us. 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. At twenty weeks, we all went to watch an ultrasound. She had such a little personality and would let you know when she didn't like something. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. We believed letting him go would be a selfless and humane thing to do. Dawn was pregnant with her third child and everything was going great. Some days are easier than others. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. His parents are so glad they decided to continue the pregnancy despite scrutiny. His heart was half the weight it should have been at 22 weeks gestation. 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. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention. 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 conceived in a short window on the middle of July 2019. The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. Every day is a struggle. I won't say it is good to know, because some of your stories are sad. 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. Trisomy 13 and Life Expectancy. Features of trisomy 13. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Trisomy 13 is a life-limiting condition and affects how long a baby is expected to survive. Dawn: Misdiagnosis . I had never I was advised to terminate as told it was trisomy 13 or 18 and incompatible with life but I refused till I knew more info. The brain anomaly was potentially a cyst which could go away on its own. She has trisomy 13, but she is living a good life. 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. SOFT US provide an excellent factsheet summary on Trisomy 13. Fast forward about 4 months and we found out I was pregnant. Our second child was lost to trisomy 13. I'm Katrina. At this point, I was already more than halfway through my pregnancy (21 weeks). 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. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. People judging you for it doesn’t help. I had the feeling something was wrong but I shrugged it off. Her name is April Rey, and we keep her in our hearts and lives as much as we can. We were ecstatic to learn of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah. She offered to stop by for a visit in the coming weeks so I could meet her son. There is also a section with some information on the DIAGNOSTIC PROCESSES you may have had mentioned to you by medical professionals. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. 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. 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. Home » Stories » Trisomy 13 » Katie’s Story. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … This past summer we started trying. Now my goal is to change the dialogue around Trisomy 18 & Trisomy 13, showing they are not "Incompatible with Life." Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. This video is all about my pregnancy story! His life was beautiful and his smile and eyes had me no longer afraid of meeting my own baby with Trisomy 13. 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