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. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. The ultrasound took about an hour, which I thought was strange. She had trouble seeing all of the things she needed to see. My baby had been trisomy 13 - and a little boy. 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. Stories - "Verity’s life is anything but futile! There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. They also talked to me about amniocentesis, which I wanted to do even though we’d have to pay for it out of pocket. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. 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. Aa. They couldn’t see everything because the baby wouldn’t move much, but the anomalies involved the heart and brain. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. Trisomy 13 Stories. I'm very scared! This blog was set up in her honor, and as a place to support other parents that walk this path. Watercolor art was commissioned by the author and used with permission. I went into the appointment aware of the last time we were there, but thinking this was routine. 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 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. This blog was set up in her honor, and as a place to support other parents that walk this path. One of our options was to continue the pregnancy and see what happens. People don’t talk about the bad; they only talk about the good. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. We spent about 14 hours over two days back and forth to the hospital. 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. This was a constant reminder of our loss. Emily Gian was pregnant, but she had to have a termination after her unborn baby was found to have trisomy 13. Our second child was lost to trisomy 13. Our other option was to terminate the pregnancy. Katie’s Story. (If you know me, perfect and medical things don’t mix.). Home » Stories » Trisomy 13 » Katie’s Story. I wanted to know if there were additional problems. At twenty weeks, we all went to watch an ultrasound. Everything was going perfectly: too well in retrospect. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … 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. Today I had an ultra screen of my second pregnancy. My husband and I have 3 children. 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. : Hi, first time post here as the past month has been extremely stressful and full of fear. The technician seemed abnormally quiet to me. Michigan has strict abortion laws. 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. Her smile and laugh light up our world." Read More. Our second child was lost to trisomy 13. Dean was misdiagnosed as being incompatible with life while in utero. But we never seriously thought we would actually be here. I believe that the decision about whether my little boy lived or died was already determined for me. And I don't wish that on strangers. 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. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Now my goal is to change the dialogue around Trisomy 18 & Trisomy 13, showing they are not "Incompatible with Life." Fast forward about 4 months and we found out I was pregnant. Home » Stories » Trisomy 13 » Gracie’s Story. What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. The icing on the cake was that my insurance wouldn’t cover it. It’s not a fun experience or an easy decision no matter how you get there. Chromosomal abnormalities are one of the most common causes of miscarriage and stillbirth. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. SOFT US provide an excellent factsheet summary on Trisomy 13. Using my voice, and sharing the stories of others, I speak up for those who can't speak for themselves. We felt much better leaving that appointment. (We found out we are not). A. I won't say it is good to know, because some of your stories are sad. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). Emotionally, that was too much for me. I could barely get the words out. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical … Journey Love Hoffman was given seven days to live. His heart was half the weight it should have been at 22 weeks gestation. In 2013 my husband and I lost a baby girl with trisomy 13. 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. 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. Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. I'm Katrina. 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). Once it was over I still had to deal with all the normal post-partum issues but without the joy of having the baby. 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. 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?!). Things may not end the same for everyone but this was my story. It was heartbreaking and horrible to relive over and over again. 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. 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. Close Pregnancy 35 and Older Community 13.9k Members Anyone have stories or experiences with trisomy 13? See more ideas about trisomy 13, patau syndrome, syndrome. It was hard and frustrating and felt like it took an eternity. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. The extra chromosome 13 can affect the development of each baby differently. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? 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. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. At twenty weeks, we all went to watch an ultrasound. This blog was set up in her honor, and as a place to support other parents that walk this path. A. We have made the decision to not continue on with the pregnancy… He was 6lbs 8oz. and had a cleft lip and palate. 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. Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. You are not alone in carrying your child with Trisomy 13 to term. Things may not end the same for everyone but this was my story. We believed letting him go would be a selfless and humane thing to do. 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 video is all about my pregnancy story! Our second child was lost to trisomy 13. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. I now volunteer at the hospital where my specialist was and where I had my procedure done. It had come back with a diagnosis of something called Mosaic Trisomy 13. All that changed one day at a routine ultrasound appointment. 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. My husband and I have 3 children. My insurance did end up covering all of it after all. We didn't know at this point if the baby was a boy or a girl because we like the suprise. So after a positive NIPT and two abnormal scans we are terminating our pregnancy. Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. 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. You are not alone in carrying your child with Trisomy 13 to term. Trisomy 13 false positive. 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. 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. Every day is a struggle. 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 occurs in 1 in 10,000 live births. They wanted us to visit a specialist. The amnio was not nearly as bad as I expected. I’d been on birth control from age 16 to 31, until we started trying to get pregnant. This blog was set up in her honor, and as a place to support other parents that walk this path. This past summer we started trying. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Our second child was lost to trisomy 13. Our second child was lost to trisomy 13. They can just give a risk assessment. They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention. This ordeal has given me a drive and a meaning, which is also helping me to heal and move forward. Momma_37. With our first pregnancy, we tried for 1.5 years to get pregnant, and needed fertility help. My whole pregnancy I was a nervous wreck but with the care & love of our fertility doctor she did everything she could to keep my nervous & stress levels down. It stays with you. My husband and I have 3 children. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. We chose to induce the pregnancy at about 20 weeks to spare her any pain. I knew we made the right decision but that didn’t make it any easier to let him go. We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk. Dawn: Misdiagnosis. If you have a Trisomy 13 story to share, please submit it to us by contacting mary@prenatalpartnersforlife.org. Q&A: How Did Legal Restrictions Affect Your Experience? Fast forward about 4 months and we found out I was pregnant. The procedure was brutal, extremely painful and nothing anybody would want to go through more than once. At this point, I was already more than halfway through my pregnancy (21 weeks). My husband is wonderful. We would figure out how to pay for it. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. At my first doctor’s appointment, the nurse asked me about genetic testing. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. I believe it is important for medical providers to treat the symptoms and not the label. Her name is April Rey, and we keep her in our hearts and lives as much as we can. We have made the decision to not continue on with the pregnancy… Trisomy 13 and Life Expectancy. Knowing that there was less judgment and more understanding takes away the fear of sharing my story. 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. I am one of the "lucky" ladies that is having a pregnancy way less typical than others. Journey Love Hoffman was given seven days to live. Gracie’s Story. We went for our anatomy scan at 20 weeks. This past summer we started trying. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. Trisomy 13 can be detected early in pregnancy by examining chromosomes from amniotic cells. Home » Stories » Trisomy 13 » Gracie’s Story. After getting pictures we went into a room to wait for the doctor to come talk to us. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. Our second child was lost to trisomy 13. Many survive only a few hours. The brain anomaly was potentially a cyst which could go away on its own. Gracie’s Story. By Gina McGarey. She has trisomy 13, but she is living a good life. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Patau syndrome- Trisomy 13: Latest Post. I paid a grand total of $120 and still can’t believe it. Or what to do with your baby’s remains, etc. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. The panorama testing showed high risk for trisomy 13 and ultrasound show soft indicators such as defects on the brain, heart defects and bright organs. The decision and procedure were not something I wanted to do; they were something I had to do. 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. 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). Hi! 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Around fifty percent of pregnancies diagnosed with Trisomy 13 at 12 weeks will end in miscarriage or stillbirth. : Hi, first time post here as the past month has been extremely stressful and full of fear. He had rocker bottom feet and a little finger attached to his pinkie. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. 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. Hi! 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 am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. He wasn’t going to live. 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. The doctor walked and said there were abnormalities visible on the ultrasound. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. I'm Katrina. 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. I won't say it is good to know, because some of your stories are sad. 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. The baby had a strong heartbeat. 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. 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