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. Dawn was pregnant with her third child and everything was going great. 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. and had a cleft lip and palate. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. It occurs in 1 in 10,000 live births. This section of our website explains the key facts about Trisomy 13 and Trisomy 18. The doctor’s wanted my Mommy and Daddy to terminate the pregnancy but they decided that they wanted to get to know me and that only God would decide what was going to be my fate. I only had until 24 weeks to end the pregnancy. I'm Katrina. Everything was going perfectly: too well in retrospect. Needless to say, everybody was beyond excited. Michigan has strict abortion laws. Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death and with severe disability among survivors. 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. Getting heartbreaking news like this is terrible enough, but then we had to quickly make this decision. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. 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. Q&A: Is the Private Support Group for Me? From what we read, babies who go full term with this face excruciating medical problems and usually die. This statistic doesn't reflect the babies with trisomies … I couldn’t have gotten through this without him. She offered to stop by for a visit in the coming weeks so I could meet her son. This past summer we started trying. There is also a section with some information on the DIAGNOSTIC PROCESSES you may have had mentioned to you by medical professionals. 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 … Things may not end the same for everyone but this was my story. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. 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 didn’t want kids until I was in my 30s. A. I will forever be grateful that his family shared him … We chose to induce the pregnancy at about 20 weeks to spare her any pain. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … By Gina McGarey. While specific aspects of affected pregnancies have been documented in the literature, few studies document the overall natural history of the trisomies. I then learned of a tiny impartial charity called Arc - Antenatal Results and Choices - which was set up … Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … One of our options was to continue the pregnancy and see what happens. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. I wanted to know if there were additional problems. It’s not a fun experience or an easy decision no matter how you get there. I spent every moment wondering if he was still alive. Everybody was waiting for the news of what we were having. It’s really fucked up to force people facing this decision and having no reasonable choice to then come up with the money to pay for it. (We found out we are not). Trisomy 13 Stories. Trisomy 13 false positive. You are not alone in carrying your child with Trisomy 13 to term. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. He had rocker bottom feet and a little finger attached to his pinkie. My insurance did end up covering all of it after all. 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. I believe that the decision about whether my little boy lived or died was already determined for me. Fast forward about 4 months and we found out I was pregnant. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. We felt much better leaving that appointment. At my first doctor’s appointment, the nurse asked me about genetic testing. Our second child was lost to trisomy 13. I am scheduled for an amniocentesis tomorrow morning. Trisomy 13 and Life Expectancy. I'm very scared! 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. 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. She also had the sweetest little squeaks. This blog was set up in her honor, and as a place to support other parents that walk this path. We were ecstatic to learn of this new sibling for brothers, 4-year-old Kieran and 2-year-old Joah. We talked with our genetic counselor about the results and our options. 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. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. We conceived in a short window on the middle of July 2019. People judging you for it doesn’t help. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. She had such a little personality and would let you know when she didn't like something. My husband is wonderful. Again we contacted our families and close friends to explain what had been discovered. We found out at our 20 week ultrasound that our baby girl has multiple anomalies consistent with trisomy 13. We conceived in a short window on the middle of July 2019. 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. We would figure out how to pay for it. Any specific questions about care should be directed to a health care professional familiar with the situation. Our second child was lost to trisomy 13. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … 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. The brain anomaly was potentially a cyst which could go away on its own. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. 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?!). She brings love and joy to our household every single day. Things may not end the same for everyone but this was my story. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. She also had so much hair and looked just like her daddy. 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). They also talked to me about amniocentesis, which I wanted to do even though we’d have to pay for it out of pocket. 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. Now my goal is to change the dialogue around Trisomy 18 & Trisomy 13, showing they are not "Incompatible with Life." Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. The icing on the cake was that my insurance wouldn’t cover it. Around fifty percent of pregnancies diagnosed with Trisomy 13 at 12 weeks will end in miscarriage or stillbirth. This time around, we knew that could happen again. We were comfortable with the doctors we had. Fast forward about 4 months and we found out I was pregnant. They can just give a risk assessment. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. The ultrasound took about an hour, which I thought was strange. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … My husband and I researched Trisomy 13 and were horrified. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? : Hi, first time post here as the past month has been extremely stressful and full of fear. 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. 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). Gracie’s Story. I could barely get the words out. What is Trisomy 13? In 2013 my husband and I lost a baby girl with trisomy 13. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. At this point, I was already more than halfway through my pregnancy (21 weeks). It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). I paid a grand total of $120 and still can’t believe it. My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. Dawn: Misdiagnosis. Until, it took almost 2 hrs!!! He had rocker bottom feet and a little finger attached to his pinkie. Every day is a struggle. This ordeal has given me a drive and a meaning, which is also helping me to heal and move forward. We went for our anatomy scan at 20 weeks. It’s difficult on top of already being crazy hormonal and heartbroken. We chose to induce the pregnancy at about 20 weeks to spare her any pain. The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. 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. It's rare. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. 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. Hi! 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. My mother-in-law believed she would die before she had grandchildren. Home » Stories » Trisomy 13 » Katie’s Story. Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! I had the feeling something was wrong but I shrugged it off. Some days are easier than others. I dealt with bodily issues for months after my procedure. Emotionally, that was too much for me. I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. We’re pregnant with baby 11!!!! We spent about 14 hours over two days back and forth to the hospital. They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention. We were sent for an early ultrasound at 8 weeks to verify dates, something […] Baby Grace. 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. My baby had been trisomy 13 - and a little boy. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. 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. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. The procedure was brutal, extremely painful and nothing anybody would want to go through more than once. I believe it is important for medical providers to treat the symptoms and not the label. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. Home » Stories » Trisomy 13 » Gracie’s Story. 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. They wanted us to visit a specialist. This blog was set up in her honor, and as a place to support other parents that walk this path. I couldn’t bear continuing with the pregnancy, having people touch my belly and having to explain that he wasn’t going to survive. Once it was over I still had to deal with all the normal post-partum issues but without the joy of having the baby. Before our Violet got her diagnosis of Trisomy 13 we had never heard of it. At twenty weeks, we all went to watch an ultrasound. The decision and procedure were not something I wanted to do; they were something I had to do. I won't say it is good to know, because some of your stories are sad. I now volunteer at the hospital where my specialist was and where I had my procedure done. 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. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. 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. The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. Many survive only a few hours. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. 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). Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. Katie’s Story. 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. Emily Gian was pregnant, but she had to have a termination after her unborn baby was found to have trisomy 13. 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. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. This was a constant reminder of our loss. It was heartbreaking and horrible to relive over and over again. Babies don’t usually make it to birth with this diagnosis. Dawn: Misdiagnosis . 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. This video is all about my pregnancy story! All that changed one day at a routine ultrasound appointment. Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. Trisomy 13 babies often suffer from interruptions in breathing as a result of their brain failing to communicate properly with their lungs to trigger breathe. It's the pregnancy loss no one talks about. Or what to do with your baby’s remains, etc. I didn’t want kids until I was in my 30s. 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. But it wouldn’t cover our choice to spare him all of that. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. His life was beautiful and his smile and eyes had me no longer afraid of meeting my own baby with Trisomy 13. I knew we made the right decision but that didn’t make it any easier to let him go. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? This past summer we started trying. 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. He was 6lbs 8oz. 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 SOFT US provide an excellent factsheet summary on Trisomy 13. (If you know me, perfect and medical things don’t mix.). Dean was misdiagnosed as being incompatible with life while in utero. Q&A: How Do You Feel About the Word Abortion? I don’t know if I ever really felt him move. What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. and had a cleft lip and palate. 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. This blog was set up in her honor, and as a place to support other parents that walk this path. Chromosomal abnormalities are one of the most common causes of miscarriage and stillbirth. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Today I had an ultra screen of my second pregnancy. 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