Trisomy 13: "Incompatible with Life"

Wednesday, March 18. 2009

Trisomy 13: "Incompatible with Life"

Trisomy 13 is a genetic condition that often causes death either in utero or shortly after birth. It is a devastating diagnosis for parents and my heart and prayers go out to all families who have dealt with trisomy 13 or will have to in the future.

But, there is always hope. There are children that survive with trisomy 13. I found the Living with Trisomy 13 website yesterday and was encouraged and sickened all at the same time. Check out the photo album of angelic faces of children with trisomy 13; it is amazing. And the testimonies of parents who have loved and lost children with trisomy 13 are truly beautiful.

I was encouraged by the strength and love of these families and sickened by the stories of the so-called "medical professionals" that they had to encounter. On the Considering Abortion? page I found this letter to parents:

Over the years I've received many emails from women who aborted, terminated or induced early their Trisomy 13 children. They were amazed and completely surprised that their child could have survived, or at least grown to a point where they could reach their mothers arms! These women were given NO HOPE that their child would make it to term. Many were even told that their child’s diagnosis was more severe than the norm and discouraged from researching the disorder for themselves. Without a full understanding of this complex disorder, they felt they had no option but to terminate with all the pressures around them. These women fall into a unique category, those who felt "pressured to interrupt their pregnancy for medical reasons."

These parents have come to the realization that it was not the trisomy 13 that took their child’s life but it was the termination and interruption of the pregnancy that ended their child’s life.

"Discouraged from researching the disorder for themselves"? "Given NO HOPE"? I cannot say I was shocked, but I was surely saddened. And then I got very angry reading the testimony of a women who did abort her trisomy 13 baby:

I would give anything, absolutely anything, to be able to do it all over again. I was uneducated about Trisomy 13. I feel as though I was mislead....

What happened to what my genetic counselor said? "Incompatible with Life", "Lethal", "Not possible". Let me just say that I have retrieved all of my medical records and told off who needed to be told. I wish I could go back to that day on the exam table, where that doctor was telling me it was hopeless. What I wouldn't give...

And again. Another woman is clearly devastated :

We went back to genetics counselor office and she explained what she thought it could be and told us what everyone has heard "incompatible with life". She told us, “he would live no longer than two days”. We had some difficult decisions to make.

We had chosen to have a termination due to all the pressure from the doctors/genetic counselors/professionals. Also at that time it was all we knew to do. No one gave us any information and we had no access to viable information....
Trisomy needs to have a bigger voice and all the professionals need to be more open minded and not so much on terminating, after all do they really know the after pains we go through? NO!

It is apparent these women were failed by the people they needed the most. The doctors and genetic counselors that did not properly educate these parents and then pushed abortion as a solution are a disgrace to the medical profession. And I know these are not isolated cases. I am reminded of this quote from Lori B. Andrews, a reproductive rights lawyer:

"A woman I know was told by her obstetrician that her fetus had Down syndrome. The doctor ordered her to abort, she refused.... Another woman was similarly coerced. Her doctor told her that her baby would be more like a fish than a human and would only be as smart as a baboon."

"Ordered to abort"? I feel sick. Any doctor or genetic counselor that does not provide their patients with all the information to make an informed decision about a child with a genetic condition, not only fail their patients, but give all genetics a bad name.

I am even more thankful now for the The Prenatally and Postnatally Diagnosed Conditions Awareness Act that is meant to help get parents the information they need. The medical profession should not need legislation to make it do its job, but that is the state of our death-obsessed society.

Be Not Afraid is a great website to help parents who have gotten a difficult prenatal diagnosis.

Posted by Rebecca Taylor in Genetic Testing at 10:55 | Comments (6) | Trackbacks (0)

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Thanks for sharing this!

Have you ever noticed that when a woman is considering aborting a healthy baby, the doctors assure her that her baby is too young and immature to feel the pain of being stabbed, poisoned, or dismembered --- but if the mother wants to NOT abort an unhealthy baby, she is told that her baby is in terrible pain and that she must abort to spare him.

They're like the wolf in the fable. Anything they can say to achieve abortion is a good enough excuse.

#1 Christina (Homepage) on 2009-03-18 16:24 (Reply)

Wonderful post! I am the proud parent of a child with Trisomy 21, otherwise known as Down syndrome

While I was pregnant with Joey, we found out through ultrasound that there was a very big chance that he did have Down syndrome.

Being Catholic, we weren't going to go through with the genetic testing, but being a first time mother at that point, I needed to know, just to prepare myself. After reading Pope John Paul II's quote of "serene acceptance", I went ahead with the testing to ease my mind.

And I too, highly suggest Be Not Afraid, it's a wonderful website!!

I love Joey with all my heart, extra chromosomes and all!

#2 Jessica (Homepage) on 2009-03-22 17:24 (Reply)

There is definitely the pressure from the MFM's (or perinatologists) and genetic counselors to abort... Other than the fact that we do have a culture of death and mercy killings (euthanasia) - I attribute it to the fact that many doctors / genetic counselors also don't know about (or have available to them) the services of a perinatal hospice. If anyone reading your article has received a difficult prenatal diagnosis, I encourage you to seek a pro-life perinatologist www.prolifemfm.org/directory.htm and/or utilize a perinatal hospice www.perinatalhospice.org/Perinatal_hospices.html)

#3 Shannon on 2009-04-01 15:38 (Reply)

In 2008 my little girl was diagnosed with trisomy 13 at 24 weeks. Considering all her defects, my husband and I made a joint decision to terminate the pregancy. I since had a healthy little boy, and now have 3 sons. We made the decision, taking her quality of life and the impact a severly handicapped child would have on our family, into account. I still cry for my baby, but if I had to make the choice again I would to the same thing. We spared her coming into this world in her condition and trying to live. On the livingwithtrisomy website a lady says something about her child not dying from trisomy 13 but dying from an untreated heart condition. That's like being in a carcrash and then saying you died from headwound, denying what caused them. All those stories are wonderful, but the truth is those children all are disabled and have many problems.

#4 Magret on 2010-08-27 09:28 (Reply)

My son Evan Cotter is five and living with trisomy 13
I was shocked to read Margret's post which I happened to find today. Yes my third child Evan was born with trisomy 13 and when he was diagnosed we where told he could not and would not live and we should let him go, plan on having another baby after all the chances of having another baby with the same condition is like winning the lotto twice in the same year. When I asked the doctor how long Evan had he looked at his watch I will never forget that. After a good cry (our lives had just being shattered) my wife and I put on a brave face never looked back.I'm fortunate that Evan was not diagnosed before his birth I don't know what we would have done and I would never have met my hero.
Mark Cotter, New York

#4.1 Mark Cotter on 2011-09-03 08:52 (Reply)

Im pregnant at 17 weeks now recently diagnosed carrying a definite trisomy 13.As expected the experts though were very nice at that time discussed to me the termination.At that moment and for another 2 days it seems thats the most logical thing (and being myself in the medical world too).I cried a lot not bec of what has my bay become but giving me the decision to end my child's life.I was so scared of the thought I was so scared with God what he might do to me if I do it.I prayed hard for him not let me commit a sin that Im sure he can forgive but not myself.After 3 days I talked to a priest and read articles about this case and read testimonies from parents who decided to abort it and it really scared me.From there my husband and I decided we will continue wit the pregnancy.As what the priest has told me if he is diagnosed to only have 2-3 days of life why take it away from him.It is not in our hands to end a life especially our childrens life.My faith in the Lord prevailed and he did not let me commit a sin that I will forever regret and will forever be my guilt.Those 3 days of planning to abort the baby destroyed me, how much more if I do it?Now my husband and I are so at peace with the decision we made I am not scared anymore to face the Lord and just a little bit scared of what will happen in the future.Im sure no parent especially a mother will be ever ready for the death of their child, but God will be with us.Thank you Lord for the guidance and the support of the family and friend.

#5 riza yap on 2012-04-14 09:27 (Reply)

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