Are the culture wars at the gates of the Trisomy 18 community?

Pro-life vs. pro-choice, same-sex marriage vs. traditional marriage, liberal college professors vs. conservative home schoolers, feminism vs. traditional roles for women — all of these issues have arisen as focal points during the GOP Presidential Primaries as highlighted in a recent article in the Seattle Times.

The relationship between religion and government has emerged as a flash point in the presidential campaign in recent days after an effort by the Obama administration to require religious institutions to include contraception in health-insurance plans for employees. All of the Republican candidates objected to the effort, which the administration tweaked after a massive outcry, especially from Catholics.

And our small Trisomy 18 community, and women’s health, has emerged at the center stage of these culture wars after Presidential candidate Rick Santorum said the following:

CBS News “Face the Nation” host Bob Schieffer asked the former Pennsylvania Senator to respond to comments Santorum made in Ohio Saturday where he said President Obama required free prenatal testing in the health care law “because it ends up in more abortions” which “cull[s] the ranks of the disabled in our society.”

Santorum told Schieffer that the policy is the “continuation” of the president’s support of aborting disabled fetuses.

“The president has a very bad record on the issue of abortion and children who are disabled who are in the womb,” Santorum said. “I think this simply is a continuation of that idea.”

Santorum said he is talking specifically about amniocentesis, an invasive test where amniotic fluid is taken from the womb. He said the procedure “actually creates a risk of having a miscarriage when you have it, and is done for the purposes of identifying maladies of a child in the womb. In many cases and in fact most cases, physicians recommend, particularly if there’s a problem, recommend abortion. . . .

“Yes, prenatal testing, amniocentesis does in fact result more often than not in abortion. That is a fact,” Santorum said.

” I know what I’m talking about here,” Santorum said. (Santorum’s daughter was born with the genetic disorder trisomy. Another of his children died two hours after birth.)

What does this mean for us as the members of this community? A Trisomy 18 diagnosis means that all of us will face pain and heartache as we lose our children far too soon. We ALL will be emotionally ravaged as we face difficult decisions. This common bond is what brings us together, but will these conversations about abortion, prenatal testing, and women’s health tear us apart bit by bit? Will we become a casualty of these culture wars, or will we face this challenge together and share our collective knowledge with the mothers and fathers who follow behind us? What knowledge would you like to share about prenatal testing and your own unique experience?

My own answer is resounding: I will stand next to the parents who choose prenatal testing AND those who don’t; I will stand next to those who say goodbye early AND those who fight like hell to keep their children alive; and I will stand next to the mother and father weeping over her infant’s bedside saying her final goodbye to the child they chose to remove from tubes and bring home to a cradle for a brief but glorious moment. These are all my people — regardless of where they stand on a cultural divide.


  1. I completely agree with your response. Although as a personal decision I probably would never choose abortion, and I think forcing people to do testing ending in possible miscarriage isn’t right either. But I cannot judge the people who chose abortion because I dont know all the specifics of their personal life. When I was in high school one of the freshman in my class was raped by a family member and she chose to have an abortion. Many topis were brought up even by teachers on whether or not it was right. It is true that the child could have possible problems being that they were “inbred” and whether or not it was fair to the child or the mother. Everyone is different as are their situations and I believe the decisions should be left to the individual. Trisomy 18 is a hard thing to deal with and wouldnt ever want to see it made worse by laws that were placed that seems to specificqlly target the choice of the parents. In the end, I hope everything is set for everyone’s best interest.

  2. Nancy Roberts says:

    I support Obama’s health care requirement to cover prenatal testing. I feel everyone should have the right to make their own decisions on what is best for them and their child. I had two daughters go through amniocentesis when they were pregnant, one gave us reason to relax and enjoy the rest of her pregnancy, the other gave us time to gather information and prepare for the birth of a child with Trisomy 18. Without healthcare covering these tests a lot of people would not be able to have a choice of finding out what there options are.

  3. Jeannette A says:

    If prenatal testing was truly being used as a way for the medical community to offer better care, preparation of the child and support, then the testing would obviously be a benefit. And for those who choose to abort, then that is their decision. However, as we know if our trisomy community, the prenatal testing is used against families that truly want to do everything for their child. IF the child had been born without any testing, every effort is made to help that child. But when the medical community realizes the diagnosis is t18, they withhold treatment, in many circumstances. Where is the outrage at this? Why are we supporting more the right of those who want to decide if the baby is worth having than that of the families who want to do everything they can to help their child. It is a slippery slope and I will fight for the rights of the unborn bc they have no voice. Does this mean I won’t help a family that has chosen to abort… But I have to take a stand somewhere….and that will be for the children. I cannot idley sit by and say nothing. I have so many friends that are desperate bc as soon as they got the prenatal diagnosis they were told that if they chose to do any interventions then they need to find another dr/hospital. All they want is to give their baby a chance….what do I say to them? Was the prenatal diagnosis beneficial? Why don’t we show more outrage at this?

  4. I chose to undergo amnio in order to have a definitive diagnosis with our last child. There was obviously something “wrong” and we felt we needed to know if order to best prepare for his needs. But I was careful in who I chose to do it. My doc’s track record was 7000-8000 performed, all on high-risk women, and NO losses due to amnio. With those odds, if ours had not survived, I felt that it was meant to be. Also, I had an increadibly supportive team, from my perinatologist, to my OBs, down to the neonatologists and the hospital. ALL we supportive of giving my son the best shot he could have, and ignoring his trisomy label except to be more careful and supportive than they normally would be. That is not the case most places. I would recomend against the amnio if they parents want life and they’re not 100% sure that they’re team is with them on this. It’s too hard to have to play doctor as well as mom, and frankly, most of us aren’t doctors. We need to be able to rely on them to let us be the decision makers for our children. Too many parents can’t.

  5. Melissa says:

    I agree with you as well. As a mother I chose to end my pregnancy with my daughter who had Trisomy 18 and it was not an easy decision. I support every persons right to choose and am thankful we still have that right. I have a very healthy three year old son whom I did not have prenatal testing with and really feel blessed.

  6. Because of my faith, I am pro-life. I have a Trisomy 18 granddaughter. It was a high risk pregnancy, as my daughter was 39 and had already had a miscarriage. She did have the amnio test and it confirmed doctors’ diagnosis that the baby had Trisomy 18. There was never a doubt that she would be carried full term and delivered. She weighed just 4 lb. 9 oz. and 17 in. long. Very small but so beautiful, even with her dislocated hip and her left leg bent forward over the right side of her body. She is now 15 months old and will be 16 months old on 3/15. She is still small, but making progress. She is such a joy. Doctors and medical institutions won’t help her. She should have heart surgery, but her pulmonary hypertension keeps this from happening. We take one day at a time and pray alot. There are literally thousands of people praying for her and I truly believe that’s what keeps her going. She is very loved and I can’t imagine giving up one minute of time with her. These children are so sweet, they are such beautiful little souls and Jesus loves each one of them. I don’t think they should be aborted for any reason. They deserve a chance for survival.

  7. I am 31 weeks pregnant with a full trisomy 18 baby, i have no regrets and even though i dont know what tomorrow brings i know i am doing what i feel in my heart is right, as far as the prenatal testing we need those things i have heard too many cases where blood test showed an error but once the amniocentesis was done there were no signs of anything wrong. Once my quad screen test came back positive i went forward with amniocentesis with no regrets now i know what i need to know and can move forward to help my little one.

  8. Alexis Rosenbaum says:

    Thank you so much! I have had the misfortune of joining before a closed Trisomy 18 group in Facebook at a time when I was in one of my crossroads: I poured out all my thoughts online and some people supported me and understood where I was coming from, some may have had disagreed with me but let me vent out my feelings online, but some too got offended by my postings and totally disagreed with my feelings/thoughts and unfortunately for me (or fortunately, maybe), the founder of the page decided that I did not ‘fit” with their group, that I was causing division within the group, and that she was “very positive no one in the group would ever put their Trisomy 18 kid in an institution” just like I did (for whatever reason). Didn’t care at all that the reason my daughter is in an “institution” which is actually just a term for a sub-acute facility (like a hospital with doctors and nurses and therapists and teachers, but NOT a hospital because it is not allowed to do any IV, surgery, etc.) is because I was burnt-out as the main carer of my daughter. Didn’t care at all that I took the risk of opening up because I was desperate. Even threw back to my face what I had said: that I had never seriously joined ANY Trisomy 18 organization either online or in the real world because in my initial attempts, I had felt DIFFERENT from anyone else and I had had initially went the other way: instead of asking for and soliciting for help and support, I tried to do everything by myself and only resorted to asking for help from doctors and hospitals. Of course now, I am realizing that support from whomever would have made the load lighter. And all I can say now is: it was, what it was. When other mothers were talking about “trivial” matters about their “normal” babies, I was living a world that was like in a twilight zone: doing my best to make my baby survive every second of the day and night. And online, when most mothers and fathers would pray for their babies to continue living, all I could think about was the PAIN AND SUFFERING they are subjecting their Trisomy 18 babies to, just to survive and be with them. I had done my fair share of flip-flopping. I WANT MY BABY TO LIVE BUT W/O THE PAIN AND SUFFERING INHERENT IN TRISOMY 18. I know the condition is manifested “differently” in terms of levels in “severity” or actual abnormality — some have it worst than others — and my baby unfortunately has it bad. One physician has told me that she has “great admiration” for my daughter as she has heard a lot of stories about her, and that she is a “fighter”. Indeed, she has been called “resilient”. We have all come a long way. Let me end this by saying: THANK YOU SO MUCH FOR YOUR SUPPORT. THANK YOU SO MUCH FOR YOUR ACCEPTANCE OF ME. THANK YOU SO MUCH FOR WORKING FOR MY CHILD’S GENERAL WELFARE VIA THE TRISOMY 18 FOUNDATION AND ITS GOALS, EFFORTS, AND ACCOMPLISHMENTS.

  9. Kim Holmes says:

    I have a 22 year old daughter with Trisomy 18 mosaic. She reads to an eleventh grade level. Plays on the computer. Uses facebook. Writes letters. Works hard. Loves to cook. My pregnancy showed signs of fetal problems but I chose not to have amniocentesis because I didn’t want to risk miscarriage. I’m glad I didn’t have the procedure because I would not have wanted to face the option of terminating my pregnancy. My heart goes out to those parents who do chose amnio and face the reality of a child with less than perfect chromosomes. I believe in free choice. I just hope and pray doctors give parents ALL the information and possibilities. My daughter is a functioning adult today and she is such a blessing in so many people’s lives. Had we known from amnio that she was “abnormal”, I honestly believe we would have terminated the pregnancy. I am so thankful we didn’t do the amnio and didn’t face the reality until she was born. Yes, she had a difficult first 5 years. Yes, it has been hard on our entire family. Yes, she needed more healthcare than my 3 other children. But, part of Trisomy has been her delayed development. She has outgrown nearly every single one of her health issues. She has not been in the hospital since 5 years old. Will every trisomy child do as well? Only our creator knows. Could another baby be like Taylor and survive to be a wonderful, loving, functioning, and productive adult? You bet! Please push doctors to give the positive possibilities. Please ask doctors to ensure parents-to-be contact families with children that are the statistic breakers. There are no guarantees with any birth. Any child. Why would anyone predetermine an outcome? If we did that, we would stop all health care for people over 50. We know they are nearing their end of life!!

    • Hey, Kim!

      It’s great to hear about your 22 year old daughter and how well she is doing. My son just turned 15 and is also reading at grade level, loves the computer, and is a history buff. When we talked to a geneticist and I asked how she would have counselled me. She said that she would have counselled me to abort. How sad! I agree that each life is precious. I can’t imagine my life without my son. He has truly been a blessing to me and all those he comes in contact with.

  10. Kim your daughter is amazing and inspirationalxx my 4 month old daughter was diagnosed by amnio during my pregnancy as mosaic trisomy 18 and at this stage other than being born 3lb 14oz is perfect thankyou for sharing your story xx

  11. Mary Ann says:

    Kim, I so appreciate your honesty. You are traveling a very difficult road and nobody should judge the decisions you have made. You’ve been a GREAT mom, who obviously loves her child. Do not take to heart other people’s judgment of you. Every situation is different and they should not be making you feel guilty. May God wonderfully bless you!

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