Have you experienced genetic discrimination?
42 Comments
Caitlin
2/5/2013 11:14:10 am
My daughter was diagnosed with full trisomy 18 while I was pregnant. When I was 26 weeks along, I developed a blood lot in my leg. Some brilliant Dr jumped to a bizarre conclusion that I had a rare clotting disorder. They said I would have to induce in order to fix the problem and that I was risking my life and least serious damage in my leg by waiting more than a week. Even a normal child would not have developed lungs at this point so we were preparing to lose our daughter and hoping for any amount of time with her. They figured out I had a typical blood clot, not uncommon in pregnancy. They all still stood by their opinions about induction. We felt like we had not choice. They night before induction one of our doctors was explaining treatment after I had the baby and it was the same as the treatment I was already receiving. We then found that women have blood clots for months during pregnancy and often deliver at full term. There would be minor damage to the vein in my leg but there was very little chance I would have serious consequences if I continued my treatment. The other doctors did not even give us the option of waiting to deliver because they did not see the value of my daughter's life because of her diagnosis. They would never recommend that route to someone in that situation with a healthy baby.
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Brandon
2/11/2013 02:57:44 am
I am so sad to hear your story. Is your baby still alive? Our society definitely needs to change
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Chris mitchell
10/20/2016 05:50:02 pm
Brandon, are you still allowing people to talk to you? I have a beautiful 72 day old granddaughter, she has full t 18, but she is still hanging in there, God has been amazing in His mercy. Her mom and dad just had the swab test done and were surprised when it came back full t 18, doctors were too.. She really shows mosaic tendency. Any way they could use someone to talk to.... can you be any help in this?
Krisitn Smith
2/5/2013 02:45:23 pm
My daughter has Full Trisomy 18 and has definately seen her fair share of genetic discrimination. She is only 11 weeks. When I was given her diagmosis prenatally, not only was I told I should terminate, they nearly made me feel like they were going to make me. I was sure that they were going to strap me down to a table and rip her out of me. When I made it very clear that I wouldn't terminate, I recieved a phone call a few days later asking if I was ready to schedule the termination.
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Brandon
2/11/2013 03:00:25 am
I am so glad that you stood up to them and for the rights of your baby. I can't believe that people would actually do that. How old is your baby now? God bless your whole family.
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Kristin
2/19/2013 04:07:49 pm
She is just 3 months old.
Freda Branch
2/6/2013 05:56:04 am
Our daughter has partial trisomy 9p, with the extra genetic material located on the 14th chromosome. We've been lucky that she never has been denied medical treatment (except by dentists). But she has been the object of censure by a few professionals. When she was born, one of our pediatricians said very matter-of-factly, "You know she'll never walk or talk." I was stunned by their insensitivity. How could they truly know that, and why would they so bluntly make that statement and just walk away? From then on we asked for one of the other doctors on staff. And when Bethany was turning 3, and we were pregnant with our second child, my own G.P. asked me, "Why would you ever want to have another child after that one?" His denunciation of my daughter's worth deeply injured me. Most people understand that every child is valuable and has something special to offer. To hear these once trusted doctors criticize my daughter was deeply injurious to my heart.
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Brandon
2/11/2013 03:04:53 am
It makes my heart sad too. Doctor's told me that I would never walk or talk. I agree with you that every life is precious and doctor's should not make those kind of decision. I am so glad that you are enjoying your time with your daughter.
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Analice
11/30/2013 04:32:31 am
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Alisha Hauber
2/9/2013 11:10:49 am
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brandon
2/11/2013 03:10:57 am
Doctor's can be so cruel! I wonder if they would do the same thing if that was their child. I am so glad that Lane is doing great. God bless you and Lane.
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Barb
2/10/2013 10:15:48 am
The discrimination we experienced was covert. We told all staff multiple times, including in a multi-disciplinary meeting, that we wished to consider all treatment that our daughter might need to prolong her life. Annie had trisomy 13, without the common brain and heart anomalies. The staff gave no indication of disagreement with our plan. Annie died at age 80 days, 24 hours after being admitted for respiratory distress. She suddenly declined and we had to make a fast decision about intubation. The doctor had told us that she needed surgery to re-make a narrow trachea and the surgery had a high mortality rate for children without chromosomal conditions. It was clear to us that this surgery was not in her best interest. After Annie died, we discovered that a DNR order had been placed before we provided consent. Lethal narcotics had been withdrawn for her at that time and all the final records were absent. An hour before she died, Annie was on BiPap with normal and stable vitals. What happened?
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brandon
2/11/2013 03:15:45 am
This makes me so angry! The church is supposed to share Christ's love not murder innocent children. I think we all need to stand up and fight this. I am so sorry about Annie.
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jessica cook
4/6/2013 01:29:27 am
Really? THE Catholic church has that protocol? I have never heard of anyone in the Catholic church encouraging anything like that. I am sorry about everything you went through.
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jessica cool
4/6/2013 01:34:37 am
Are you talking about a Catholic hospital? I am really curious because I can't imagine that is the Church's position. I know there are some gray areas in the hospitals. I just think that's terrible.
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4/11/2013 05:55:27 pm
My daughter, Evy Kristine, was diagnosed with full triomy 18 in my 15th week of pregnancy. I experienced quite a lot of pressure to abort, but that was not an option for me. Evy was my daughter, with or without extra chromosomes, I wanted to keep her for as long as possible.
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5/16/2013 09:03:12 am
Yes, my son has experienced genetic discrimination. Please read I am not a syndrome-my name is Simon. SOFT receives a portion of proceeds.
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7/25/2013 04:10:27 am
One of my daughters, Katya Sansalone, is a person with full trisomy 13. During her neonatal period, world-renowned doctors claimed that she would not make it past a few days/weeks... then they had to 'revise' that to months. Et cetera.
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Analice
11/29/2013 04:19:36 am
I have a daughter diagnosed with trisomy 18. She has three months of life. I'm interested in the topic and would like to know if you have translations into other languages?
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11/30/2013 01:30:40 am
Analice- if you are referring to the book, I am not a syndrome-my name is Simon, it is in English. If you go online to 11/30/2013 01:31:09 am
Analice- if you are referring to the book, I am not a syndrome-my name is Simon, it is in English. If you go online to 11/30/2013 01:31:29 am
Analice- if you are referring to the book, I am not a syndrome-my name is Simon, it is in English. If you go online to 11/30/2013 01:32:02 am
Analice- if you are referring to the book, I am not a syndrome-my name is Simon, it is in English. If you go online to 11/30/2013 01:32:21 am
Analice- if you are referring to the book, I am not a syndrome-my name is Simon, it is in English. If you go online to 12/1/2013 03:53:04 pm
Analice - I have written a book in Norwegian about my daughter with trisomy 18, but I guess that is not of interest for you. (Just in case, the title is "Evy Kristine - retten til et annerledesbarn"). In addition, I have co-founded an international trisomy 18 and 13 website, with booklets for parents and siblings translated into several languages - for free download - please take a look at http://www.internationaltrisomyalliance.com/free-booklets.html
I found your profile one SOFT. I was wondering if you could help me do a homework assignment on trisomy 18. I need to do any interview with someone who has trisomy 18. I hope that you will help me. Here are the questions that I need to ask for my interview. For my interview I need to know your contact information so that if my teacher wants to check in on this. Can you give me some background information about your family and yourself? What characteristics of trisomy 18 affected you and your family? What interventions did the family use or receive and what interventions did you like for you and your family? What recommendations do you or your family have for educators working with children who have trisomy 18? What resources can you recommend for other families and educators that will help them understand trisomy 18?
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11/18/2013 04:14:26 am
Heather-I can send you Simon's book that has been published. I have a few from a Respect Life conference I worked a few weeks ago. Or you can order online and get the ebook. If you would like me to send you a print version, email me at simonismyname@att.net
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Bobby
12/18/2013 05:29:33 am
Sorry my story is very long but I will try and keep it as short as poss. I live in the UK just after my 42nd Birthday I found out I was expecting my 2nd child. I already have a 10 year old daughter. I will be honest last thing I wanted was a baby I was horrified at first and considered a termination But then a light came on and I remembered what a joy it was to have my daughter and now I had been given the chance to go through all that joy for a second time. I noticed immediately how things had changed in 10 years. With my first pregnancy the midwife came to my home every to weeks to monitor me and baby but now I discovered that I had to go visit her just a handful of times throughout. (NHS cuts I suppose). Now here in the UK I have noticed no one seems to mention the T word. I asked my midwife what are my chances of having a baby with problems? Her reply 'oh don't be silly you have a healthy daughter there is no reason for you to have any problems'. But I am 42? I was offered Downs syndrome screening after all If there was anything else I was at risk of they would tell me wouldnt they? I refused downs screening I told them if I had a down syndrome child I would rather know after birth and cope because I would not be able to kill a child just because it was different. Everything seemed to be going well scans all showed healthy baby developing well. But at 17 weeks I had to go to hospital by ambulance I thought I was miscarrying but scan said all was well still developing normally but I was to take it easy and be checked more often by my midwife. After a couple of days I was aloud home rang my midwife but she wouldnt see me until after my 20 week scan luckily I have a fantastic GP who offered to see me every week so I could listen to heartbeat and just have a general check over. The day of my scan arrived. My husband and I were so excited to see if we were having a boy or a girl. I lay and watched the screen no doubt we were having a boy I already had a girl so one of each. Brilliant for a whole 5 minutes. Then came the end of our excitement. we were sat in a small room A small woman came in and said we have found some abnormalities with your baby I am referring you to a fetal medicine unit. Then the first time I had ever heard the words 'Edwards syndrome' What's that? I asked It's a genetic disorder I was told Do not look it up on the internet! I was handed a leaflet on amniositesis and that was that. A day later at the fetal medicine unit The scan showed very severe internal organ abnormalities. An amnio was done and my scan report said serious quality of life issues. Incompatible with life. I was stunned I had so many scans. Why had nothing shown up on those? My questions were not answered. They way things were explained to me were wrong I was told All Edwards babies DIE. My baby would have a horrific death if he lasted to full term. Every professional that I spoke to said the same Terminate your pregnancy! What do I do?? My baby was jumping around in my belly I had seen him on the scan monitor so many times but now I am being told I will be selfish to keep him? He will suffer I was told again and again yet not one person gave me any info on T18. I went to see my GP the next day he told me to take as much time but again going by what he saw on the scan report he told me the outcome would not be good. My GP arranged for me to go back to the fetal unit in a week to talk things over again with staff before a termination. But my midwife got together with another from my local hospital and cancelled my GP and fetal unit appointment. I was told I had to take a tablet that following day otherwise I would have to commit fetuside. So within 5 days I was diagnosed and bullied into what I can only call Murdering my baby. He was an 11 hour labour just 21 weeks he was still born but so beautiful even more handsome than his dad we had him blessed I named him after my dad who past away in 2006. I asked for a postmortem to be done. He was born on 4th Aug we didn't get his body back until November 3 long months. Then came the post mortem report. I am sure you can imagine my horror ad I read through it. All internal organs NORMAL! brain NORMAL. All he had was cosmetic hair lip small low set ears etc. No one can tell me why there are so many discrepancies in scans and post mortem. Genetic says mosaic trisomy 18! My GP says he was definitely NOT Incompatible with life. Now I am fighting to raise awareness and educate staff. My son should be here his due date was last week. But so much ignorance and misinformation amongst the people I should have been able to trust. Even now in meetings with consultants I am still told Well he would have died any. Just today a genetic consultant told me only mosaic trisomy patients with less than 50% have any chance of life. I will fight now till I draw My last breath for the sake of my son. If I can educate just a hand full of professionals and save a family going through the hell that
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Brandon
12/21/2013 03:04:07 am
I am so sorry. Thank you for fighting for truth. I will continue to fight too!
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Kiku
2/13/2014 12:11:10 am
Dear Bobby,
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Brandon
2/14/2014 01:51:50 am
Kiku, may God give you the strength you need.
Nicole Fox
3/17/2014 04:04:52 pm
My name is Nicole 21 and I am 14 weeks pregnant with my first child. When I was 10 weeks my doctor set up and routine ultra sound and he found fluid around my babies head. He sent me to another city to see a specialist for another ultrasound. They called it "Cystic Hygroma" the Doctor was very nice but told us it could be from a genetic issue. He ordered a MM21 blood test. A week later we got the news my baby has Trisomy 18. My regular MD set up an appointment to go over my options. First the nurse didnt even know why I was there and said "oh was it a hormone test" then after i told her my baby had trisomy 18 she looked at my mom like I wasnt there and asked "How I was holding up" then the Dr came in. First, he asked if i knew that Medicaid in my state would NOT pay for an abortion. he than told us how MUCH one would cost. he recommended coming up with the money to pay for one because my child would be Incompatible to life. My mom told him that I didnt want to abort my baby anyways because I wanted to hold him/her. His answer " You do know your baby is going to be disfigured and not pretty?" I live in a small town and all I am asking for is for my choice to be respected and for me and my baby to be treated with dignity. They say that my Daughter ( yes she is a girl which we saw on the report, the MD didnt tell us) isnt going to live or be a "contribute to society" therefore she doesnt deserve a fighting chance at life. Im looking for the right OB/GYN and Pediatrician that will just help me and my daughter.
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Andrew Siebert
3/23/2014 10:55:09 am
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Lindsay Saiki
10/24/2014 03:50:18 pm
Andrew, I have a 10 week old daughter with T18 and she also has DORV with a VSD. We never expected her to live this long and we were not planning on pursuing any surgical solutions, but the longer she is with us, the more we are thinking about it. She has an NG tube, but otherwise requires no additional assistance. She eats well and is growing. May I ask how the surgery went for your daughter? Can you give any advice?
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Michael
3/25/2014 10:50:35 am
At about 16 weeks my wife and I were told by doctors they suspected trisomy 18 in our daughter as they found a couple soft markers which on their own were not considered fatal. They had even said the ventrical septal defect was repairable and was 90% successful. However because they suspected Trisomy 18 we were told no surgeries would be considered and pushed us to have an amneocentesis as we were getting close to 21 weeks and then we would be to far along to legally have an abortion. We explained an abortion was not an option and we would love her no matter what special needs she had. We were also told not to research trisomy 18 online, which I never really understood why?.....Perhaps so we did not get even more stressed out?.....Or so we did not find out some children with trisomy 18 were living longer and doing well after surgeries. I felt Genetic Discrimination when they said they would not conduct heart surgery because she had trisomy 18. I never understood why they could not treat the person or the condition? My daughter was born on February 9, 2014 and survived 5 weeks 1 day. She had heart issues, which could have been corrected but because of the trisomy 18 diagnosis they sent us home. After 2 weeks at home and her heart working overtime trying to pump blood with the valves not closing properly she passed away peacefully at home. I am certain she died of congestive heart failure. That morning she had fluid building on the lungs and coughed up some mucus earlier with some small amounts of blood. She was so precious and a huge blessing to our family my prayer is that doctors give parents all the information they can to make the best choices for our children and especially treat each case individually and treat the symptoms!
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Wilma Bates
5/14/2014 06:48:22 pm
I just recently found out that my 10 year old son has Mosaic Trisomy 18 i have been fighting for him since he was 10 months old when I knew there was something wrong. Brandon was different then my other kids. When he was a year i finally got someone to listen to me and started getting help through the Regional Center but then when he turned 3 they dropped him because he wasn't mentally retarded they said so Brandon was given an IEP and the school district took over, however when he started kindergarten his IEP was taken away and my baby struggled so bad in school. I was living in Los Angeles at the time and wad getting no help for him so I moved to Orange County and got Brandon in a really good school with teachers and people who cared and helped me to get Brandon tested for all kinds of stuff. First they said he had A.P.D. Auditory Processing Disorder and then that he also had ADD- Attention Deficit Disorder and he was put on Ritalin we were finally sent to see a neurologist who took one look at him and believed that he may have Trisomy 18 and sent us to Genetics where he was tested and a week later we were told that our son has Mosaic Trisomy 18 and that his is a very rare case and that there are only 35 cases reported in the medical literature. The Genetics Doctor was very nice and explained it to us very well however this is pretty new to them that they can't really tell us what we have to look foreword too except that he will need surgery on his back in the future and surgery to correct his speech and that he may need to be taken care of for the rest of his life. I was 42 when I had Brandon, not a planned pregnancy but a blessing just the same. I was never checked to see if my baby was okay however if i had been it didn't matter what they told me, I would have had him anyway and put it in God's hands. I am just really mad that it took 10 years for someone to get the right diagnosis and Brandon missed out on all those years that he should have been getting help. Please keep Brandon in your prayers he is a fighter that is for sure and such a caring and loving little man. He is my gift from God....Please if anyone has any ideas on how his school and i can best help him please put them out there...
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7/8/2014 12:24:19 am
Great lesson in perseverance and greatness ... thanks Brandon for existing and giving us the power to continue in this difficult journey...
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Johanna Aranguiz
7/8/2014 01:55:23 am
Our baby Agatha was born two and a half ago, we didn't know about her diagnosis until her birth. It was terrible to face this news and we didn't know anything about mosaic trisomy 18. The first words that Doctors told us were "incompatible with life"....which completely devastated us!!.
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7/8/2014 01:55:40 am
Our baby Agatha was born two and a half ago, we didn't know about her diagnosis until her birth. It was terrible to face this news and we didn't know anything about mosaic trisomy 18. The first words that Doctors told us were "incompatible with life"....which completely devastated us!!.
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Virginia Monson
1/23/2015 06:44:06 am
Before yesterday I never heard of, or knew anything about Mosaic Trisomy 18. I periodically listen to a local talk show out of Trenton, NJ, 101.5. I don't remember what the call-in question was, but I do remember the person who called in. He was a father of a young boy. He mentioned that his son has MT18 and was in special ed, but mainstreamed for 2 classes, one of which was Science. What bothered me was the inconsideration, and the ignorance of the radio hosts. While the father was talking about his son and MT18, the hosts were speaking over him. The female host while talking over the father jokingly said to the father that she too has MT18. The father is trying to get them to understand what he son has to deal with in school and they continued to joke, the female host now saying they had 101.5 syndrome. I want to apologize for their ignorance and bad taste. I now needed to know what Mosaic Trisomy 18 was, but I wasn't sure of it's name. I could only remember that it was called Mosaic Tri...18. I stumbled across Brandon's website and I learned a lot. You are a beautiful young man. You are not a statistic and I thank you for teaching me about MT18.
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Rene
11/9/2018 08:38:46 pm
I will comment when I have the strength. Just want to say THANK YOU!
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AuthorBrandon has Mosaic Trisomy 18. He is Changing the Dialogue around this diagnosis showing that Trisomy 18 is definitely not "Incompatible with Life" rather, "Very Worthy of Life". Archives
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