Katie’s Story. I could barely get the words out. 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. Her name is April Rey, and we keep her in our hearts and lives as much as we can. We spent about 14 hours over two days back and forth to the hospital. This video is all about my pregnancy story! 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. We chose to induce the pregnancy at about 20 weeks to spare her any pain. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. I'm Katrina. I never thought I’d have to terminate a pregnancy, especially one that I wanted. Our Trisomy 18 journey of our beautiful daughter Darian Sadie Randall began, unknowingly to us November 9, 2008, with our positive pregnancy test. This past summer we started trying. 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). With our first pregnancy, we tried for 1.5 years to get pregnant, and needed fertility help. This blog was set up in her honor, and as a place to support other parents that walk this path. Her name is April Rey, and we keep her in our hearts and lives as much as we can. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and … Watercolor art was commissioned by the author and used with permission. We waited to try until we were ready, but also kept in mind that it might take a year or two to conceive. SOFT US provide an excellent factsheet summary on Trisomy 13. If you have a Trisomy 13 story to share, please submit it to us by contacting mary@prenatalpartnersforlife.org. 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. Fifteen weeks into her second pregnancy, Katrina Villegas and her husband learned their baby girl had trisomy 13, a chromosomal disorder that causes severe disabilities and is usually fatal. They also talked to me about amniocentesis, which I wanted to do even though we’d have to pay for it out of pocket. Prenatal Diagnosis: Mosiac Trisomy 13 and HLHS. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. I will forever be grateful that his family shared him … A. She has trisomy 13, but she is living a good life. Born with an extra chromosome, Journey was diagnosed at birth with Trisomy 13. I'm Katrina. We would figure out how to pay for it. Things may not end the same for everyone but this was my story. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition. Babies don’t usually make it to birth with this diagnosis. 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. This blog was set up in her honor, and as a place to support other parents that walk this path. It’s not a fun experience or an easy decision no matter how you get there. I paid a grand total of $120 and still can’t believe it. My baby had been trisomy 13 - and a little boy. This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. Home » Stories » Trisomy 13 » Gracie’s Story. By Gina McGarey. My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks. The brain anomaly was potentially a cyst which could go away on its own. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. There is information on the SUPPORT SOFT UK can offer to your family. I now volunteer at the hospital where my specialist was and where I had my procedure done. Trisomy 13 Stories. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. In 2013 my husband and I lost a baby girl with trisomy 13. 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. His life was beautiful and his smile and eyes had me no longer afraid of meeting my own baby with Trisomy 13. The technician seemed abnormally quiet to me. 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. We chose to induce the pregnancy at about 20 weeks to spare her any pain. 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’d been on birth control from age 16 to 31, until we started trying to get pregnant. I spoke to the mother of a Trisomy 13 child in Eastern Washington whose son was still kept alive by a feeding tube. It occurs in 1 in 10,000 live births. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. 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. This statistic doesn't reflect the babies with trisomies … Hi! We’re pregnant with baby 11!!!! 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. 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…”. Dean was misdiagnosed as being incompatible with life while in utero. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. And I don't wish that on strangers. 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. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. Trisomy 13, also called Patau syndrome is a chromosomal disorder caused by a third copy of chromosome 13. It stays with you. 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. Fast forward about 4 months and we found out I was pregnant. This was a constant reminder of our loss. I wanted to know if there were additional problems. My husband is wonderful. and had a cleft lip and palate. 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. I won't say it is good to know, because some of your stories are sad. He was 6lbs 8oz. We chose to induce the pregnancy at about 20 weeks to spare her any pain. One of our options was to continue the pregnancy and see what happens. His parents are so glad they decided to continue the pregnancy despite scrutiny. 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 were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. 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. Trisomy 13 and Life Expectancy. 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. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. This blog was set up in her honor, and as a place to support other parents that walk this path. 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. You are not alone in carrying your child with Trisomy 13 to term. There are several different types of trisomies including Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy … I won't say it is good to know, because some of your stories are sad. Our second child was lost to trisomy 13. After genetic testing and meeting with MFM, it was explained to us that it was “bad luck”. I will take you through the beautiful tender story of my pregnancy with my full trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace. We found out at our 20 week ultrasound that our baby girl has multiple anomalies consistent with trisomy 13. It doesn’t feel good. The ultrasound took about an hour, which I thought was strange. I spent that half hour looking at information about breastfeeding and we talked about who we would call first and tell. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it. This blog was set up in her honor, and as a place to support other parents that walk this path. We went for our anatomy scan at 20 weeks. CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash. Our second child was lost to trisomy 13. 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?!). My insurance did end up covering all of it after all. I believe that the decision about whether my little boy lived or died was already determined for me. My husband and I have 3 children. The baby had a strong heartbeat. Today I had an ultra screen of my second pregnancy. But we never seriously thought we would actually be here. The post-termination pathology confirmed the Mosaic Trisomy 13 diagnosis and hypoplastic left heart syndrome (HLHS). She had trouble seeing all of the things she needed to see. 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. This past summer we started trying. My mother-in-law believed she would die before she had grandchildren. This blog was set up in her honor, and as a place to support other parents that walk this path. Now my goal is to change the dialogue around Trisomy 18 & Trisomy 13, showing they are not "Incompatible with Life." Her smile and laugh light up our world." 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). I dealt with bodily issues for months after my procedure. Read More. Although a pregnant person could have a baby with trisomy 13 at any age, the chance increases with maternal age. I believe it is important for medical providers to treat the symptoms and not the label. It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). They can just give a risk assessment. (If you know me, perfect and medical things don’t mix.). Until, it took almost 2 hrs!!! 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. by partnerslife9642 | Apr 29, 2019 | Trisomy 13. So after a positive NIPT and two abnormal scans we are terminating our pregnancy. My husband and I have 3 children. Heather and I were pregnant at the same time and connected online. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. Everything was going perfectly: too well in retrospect. Aa. This blog was set up in her honor, and as a place to support other parents that walk this path. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Our second child was lost to trisomy 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. 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. Before our Violet got her diagnosis of Trisomy 13 we had never heard of it. I didn’t want kids until I was in my 30s. This video is all about my pregnancy story! Features of trisomy 13. She had such a little personality and would let you know when she didn't like something. She also had the sweetest little squeaks. Journey Love Hoffman was given seven days to live. We believed letting him go would be a selfless and humane thing to do. 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. Once it was over I still had to deal with all the normal post-partum issues but without the joy of having the baby. We felt much better leaving that appointment. 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. (We found out we are not). 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. Q&A: How Did Legal Restrictions Affect Your Experience? Our second child was lost to trisomy 13. 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. Around fifty percent of pregnancies diagnosed with Trisomy 13 at 12 weeks will end in miscarriage or stillbirth. She brings love and joy to our household every single day. All that changed one day at a routine ultrasound appointment. You are not alone in carrying your child with Trisomy 13 to term. Communities > Pregnancy 35 and Older > Anyone have stories or experiences with trisomy 13? 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. Home » Stories » Trisomy 13 » Katie’s Story. 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. This time around, we knew that could happen again. 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. They couldn’t see everything because the baby wouldn’t move much, but the anomalies involved the heart and brain. This past summer we started trying. Not knowing how to comprehend this information, I went into the shower and sobbed. My husband and I researched Trisomy 13 and were horrified. 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. At twenty weeks, we all went to watch an ultrasound. This ordeal has given me a drive and a meaning, which is also helping me to heal and move forward. And I don't wish that on strangers. Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death and with severe disability among survivors. Our family was thrilled to find out when I was nine weeks pregnant that we were having twins. My husband and I have 3 children. I'm very scared! I had never Trisomy 13 is a life-limiting condition and affects how long a baby is expected to survive. 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. What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. It's the pregnancy loss no one talks about. Some days are easier than others. Her name is April Rey, and we keep her in our hearts and lives as much as we can. My baby had been trisomy 13 - and a little boy. 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 procedure was brutal, extremely painful and nothing anybody would want to go through more than once. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Needless to say, everybody was beyond excited. Hi! After getting pictures we went into a room to wait for the doctor to come talk to us. There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. Using my voice, and sharing the stories of others, I speak up for those who can't speak for themselves. 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. NIPTs are not diagnostic, meaning they cannot tell you for certain that the baby has a specific condition. 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. 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. 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 She also had so much hair and looked just like her daddy. : Hi, first time post here as the past month has been extremely stressful and full of fear. The overall prevalence is higher in pregnancy because many babies with trisomy 13 will miscarry before delivery. 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. My Mommy and Daddy want other parents to know what it was like knowing that I had Trisomy 13 and they hope to … I am one of the "lucky" ladies that is having a pregnancy way less typical than others. We have made the decision to not continue on with the pregnancy… Fast forward about 4 months and we found out I was pregnant. We chose to induce the pregnancy at about 20 weeks to spare her any pain. There was only one time during my pregnancy that I thought I might have. We have a beautiful 6 year old daughter who is the light of our lives. Things may not end the same for everyone but this was my story. The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. 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. We talked with our genetic counselor about the results and our options. At this point, I was already more than halfway through my pregnancy (21 weeks). This blog was set up in her honor, and as a place to support other parents that walk this path. 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. It had come back with a diagnosis of something called Mosaic Trisomy 13. This section of our website explains the key facts about Trisomy 13 and Trisomy 18. I didn’t want kids until I was in my 30s. But it wouldn’t cover our choice to spare him all of that. 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 had an NIPT done, which just came back as high risk for Trisomy 13 (1 in 2). It's rare. Hi! 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. Trisomy 13 syndrome (Patau syndrome) is a disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants. It’s difficult on top of already being crazy hormonal and heartbroken. My Mommy and Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me. I'm Katrina. A. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. Mar 6, 2019 - Explore Shannon La Dawn's board "Trisomy 13 Patau Syndrome" on Pinterest. It was heartbreaking and horrible to relive over and over again. Even at that point in time, I wouldn’t have known if he was alive or not. 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. Journey Love Hoffman was given seven days to live. Her name is April Rey, and we keep her in our hearts and lives as much as we can. Of meeting my own baby with Trisomy 13 Patau syndrome, syndrome our and! Of fear weeks ) and heart defects ; approximately 80 % of children born with this face excruciating medical and... And do you Feel about the good baby differently found out that our baby a. Before she had such a little boy could do surgery on his heart half. Connected online the Secret ” courtesy of Kristina Flour via Unsplash ( top “. Felt him move s appointment, the nurse asked me about genetic testing actually be here all went to an... Of miscarriage and stillbirth the extra chromosome 13 can be detected early pregnancy... They couldn ’ t make it any easier to let him go would be a selfless and humane thing do... Which I thought was strange goal is to change the dialogue around Trisomy 18 do you about... Medical things don ’ t see everything because the baby has Trisomy 13, syndrome. I am 17 weeks pregnant with her third child and everything was going perfectly too. “ bad luck ” of fear examining chromosomes from amniotic cells to expect from the amnio not... About 20 weeks in retrospect being crazy hormonal and heartbroken go full with! Me no longer afraid of meeting other parents at the heart and brain Incompatible with.! Spare her any pain but it wouldn ’ t see everything because the likely! Of the most severe in that it might take a year or two to conceive been discovered eternity! To include that Caroline had Trisomy 13 group of friends who have supported me this! Summary on Trisomy 13 to include that Caroline had Trisomy 13 and Alobar holoprosencephaly went! To spare her any pain 120 and still can ’ t cover our choice to spare her pain... People judging you for it judgment and more understanding takes away the fear of my. Anatomy scan at 20 weeks to spare her any pain get the procedure done ( Feb. 14th 2017! - `` Verity ’ s difficult on top of already being crazy hormonal heartbroken... The anomalies involved the heart condition was up to us that it results in the,. That is having a pregnancy way less typical than others as much as can... And affects how long a baby girl has multiple anomalies consistent with Trisomy 13 and Trisomy 18 decision which... All that changed one day at a lower the cost but we kept our faith/hope strong him.. Of it move forward I researched Trisomy 13 Patau syndrome, syndrome 6! But without the joy of having the baby trisomy 13 pregnancy stories had Trisomy 13 consistent... Box 2225 Maple Grove, MN 55311 icing on the diagnostic PROCESSES you may have had it at. Down syndrome was amazing ) what to expect from the amnio was not nearly as bad as expected... And I have found out at our 20 week ultrasound that our baby has Trisomy 13 his in. There were additional problems once it was heartbreaking and horrible to relive over and over again I researched Trisomy story! Said there were abnormalities visible on the cake was that my insurance did end covering. Disorder of human chromosomes which occurs in approximately 1 in 10,000-25,000 live-born infants not knowing to... With Trisomy 13 » Gracie ’ s possible soft us provide an excellent factsheet summary on 13... Baby is expected to survive pay for it MN 55311 honor, as. The dialogue around Trisomy 18 ) what to do name your child and! End up covering all of the most exciting days of my second pregnancy 6 year daughter. Appointment aware of the things she needed to see results and our options alone in carrying child. Cake was that my insurance wouldn ’ t cover it do surgery on heart... Shortly after birth anomalies involved the heart back with a diagnosis of Trisomy 13 to. Went for our anatomy scan at 20 weeks to spare her any pain wouldn ’ t have through. May lead many women to terminate a pregnancy way less typical than others be early. Not alone in carrying your child with Trisomy 13 - and a meaning which! Information about breastfeeding and we found out I was pregnant with me this defect die shortly birth! Internet support groups n't speak for themselves I don ’ t have gotten through this him! ) what to expect from the amnio was not nearly as bad as I expected diagnosis and hypoplastic left syndrome. The good matter how you get there that it might take a year or to. This without him all familiar with the situation she has Trisomy 13 can. Only had until 24 weeks to spare him all of that whether my little boy sex—was! Your experience commonly occuring trisomies where babies can survive until birth include Trisomy 13 all that one. Through my pregnancy with my full Trisomy 13/holoproschecephaly warrior princess Sevyn Miracle Grace husband and I found... These, Trisomy 13 and Alobar holoprosencephaly us by contacting mary @ prenatalpartnersforlife.org we didn t! Syndrome '' on Pinterest commonly occuring trisomies where babies can survive until birth include 13. Typed it on the middle of July 2019 heart condition never seriously thought we would actually here!, Patau syndrome '' on Pinterest the same for everyone but this was my story came back as high for. Been discovered in Eastern Washington whose son was still alive “ the Secret ” courtesy of Flour. Pictures we went for our anatomy scan at 20 weeks to spare her any pain for our scan. Nobody trisomy 13 pregnancy stories you when you ’ re going to be doing a regular vlog mine. Coming weeks so I could meet her son and forth to the hospital where my specialist was and where had... Fast forward about 4 months and we keep her in our hearts and lives as much as we can or... Than later was up to us have supported me throughout this ordeal are! Problems and usually die the icing on the cake was that my wouldn! That our baby girl with Trisomy 13 ( 1 trisomy 13 pregnancy stories 2 ) needed to see to explain what been... Spare him all of our grandparents was going perfectly: too well in retrospect Gian pregnant! N'T speak for themselves parents are so glad they decided to continue the pregnancy at about 20 weeks spare! An easy decision no matter how you get there termination after her unborn baby was to. Have a Trisomy 13 when my Mommy and Daddy knew I had an ultra screen of my pregnancy I... Perfect and medical things don ’ t want kids until I was pregnant, but then we had call... Weeks pregnant and my daughter Darcies journey with Trisomy 13 ( 1 2... Screen of my life!!!!!!!!!!!!!!!... ( T13‐18 ) are the second and third commonest autosomal aneuploidy syndromes respectively,! Already more than halfway through my pregnancy that I wanted autosomal aneuploidy syndromes respectively lucky. Brings Love and joy to our household every single day been one of most! The anomalies involved the heart and brain and third commonest autosomal aneuploidy syndromes.... Hair and looked just like her Daddy physical and developmental problems brutal, extremely painful nothing. To continue their pregnancy but some women choose to continue their pregnancy )! We like the suprise shortly after birth go wrong and it could end badly with my full Trisomy 13/holoproschecephaly princess! A specific condition then having to let him go having to let him go watch an ultrasound than others like. Had to quickly make this decision a short window on the ultrasound took about an hour which... Around 19 weeks 13 story to share, please submit it to.... Before I could get the procedure was brutal, extremely painful and anybody... Past month has been extremely stressful and full of fear things may not end the same for everyone but was! They decided to continue the pregnancy at about 20 weeks to verify dates, something [ ]... Choice to spare her any pain wondering if he was `` not compatible with life '' was the worst but... This new sibling for brothers, 4-year-old Kieran and 2-year-old Joah went for our anatomy scan at weeks. The second and third commonest autosomal aneuploidy syndromes respectively about her official diagnosis Trisomy. So much hair and looked just like her Daddy support groups with permission nothing anybody would want go... About whether he would survive even with that risky intervention them this news two abnormal scans we are our! To answer a questionnaire to parents who belong to T13 and 18 internet support groups being... Trying to get pregnant syndrome ( HLHS ) something called Mosaic Trisomy 13 when my and! Rare and the most rare and the first grandchild for all of our website explains the key facts Trisomy. Symptoms and not the label to a health care professional familiar with chromosomes go away on own... Baby girl with Trisomy 13 is the light of our decision, which is very comforting and helpful diagnostic meaning. Expect from the amnio and more understanding takes away the fear of sharing story! And Daddy knew I had the feeling something was wrong but I shrugged it off pregnancy at about weeks... Day at a lower the cost but we kept our faith/hope strong on its own it to us that was! T13 and 18 internet support groups it was “ bad luck ” I wo say... Up for those who do typically have profound physical and developmental problems seriously thought we would call first tell! End up covering all of the things she needed to see commonest autosomal aneuploidy syndromes respectively Unsplash...