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Monday, April 30, 2012

Prenatal Testing - Friend or Foe?

I am not against the idea of prenatal testing. I had the triple or quad screens done with 4 out of 5 of my pregnancies.  But there are so many questions surrounding the pushes for prenatal testing coverage as a mandated insurance cost.  Can prenatal testing save insurance companies a lot of money and reduce risk from more invasive procedures? Can it help parents better prepare and make decisions? I am sure it can in some ways. But at what cost to our humanity?  And is it fair to push prenatal testing and/or its associated costs on families not interested in ever participating?  

For Rebekah's pregnancy, we had prenatal testing done in the form of an amniocentesis at 19 weeks gestation due to all of the problems and soft markers that were on our ultrasounds. Given a good guess that we were looking at a severe chromosome trisomy like 18 or 13, I found myself praying that my child would simply have Down's Syndrome and have a better chance at life. What a change in perspective, huh?  And, while never pushed for an abortion (because we made our stance very clear), we were painted a pretty bleak picture of what the future would hold...marriage stress, life with a 'vegetable', no hope, told our money would be better spent sending our 4 boys to college, and so on. 

Why did we get the testing done? We wanted to prepare and educate ourselves in order to provide the best options for our child. If she really was going to die at or before birth, we wanted to hold her, have pictures taken of her, to let her brothers meet her, have her funeral arrangements in order so we wouldn't have to deal with that stress at birth... We did not want her whisked away to a NICU to die on machines. 

Unfortunately, the testing backfired and, while we thought we were best preparing ourselves, we were just being inundated with old statistics and outdated/inexperienced opinions that led to palliative care preparation.  Resources from the internet (at that time) were 99% gloom and doom, and we received no positive resources from our doctors (in terms of being told about support organizations and groups, data on kids that survive, etc). Don't get me wrong... we had many compassionate, wonderful medical professionals that helped us prepare! We are extremely grateful for the consideration and understanding of our Maternal Fetal Medicine OB and perinatal hospice nurse - both who helped us make appropriate arrangements. 

But I can't help but think we sold our daughter short. We did not intervene early on, and she suffered from 5 weeks of worsening and life-threatening apnea events that, because of her prenatal diagnosis, were written off as symptoms of trisomy 18. Addressing them would only "increase her suffering, prolong her miserably existence, and lead to financial and marriage woes" because the problems were inherent to the extra 18th chromosome. In other words, trisomy 18 went beyond a diagnosis and, wrongfully, became the prognosis.  We did more harm to her not intervening early on and not pushing for medical interventions. Once we finally realized she wanted to be here and was fighting, we knew we had to fight with her. We soon pushed for all kinds of testing to determine her apnea issues, and the results amazed her medical team because they were TREATABLE. What our prenatal testing resulted in was prenatal genetic discrimination, reduction of early intervention options, no early "invasive procedures", and a preconceived idea from just about every medical professional involved of what our daughter would/wouldn't be. Let me just say that she has probably exceeded all of their expectations, and she probably did that before she even reached a year old. 

I am not against someone having a prenatal test... but I am against discrimination and genocide. I now suggest that families do not get their genetic testing done until after birth so that their child is given more opportunities. And yes, I am realistic. I think about my daughter's lifespan everyday because, statistically, she is a "long-term survivor" of trisomy 18 and I have not heard of any T18 children that have lived a normal life span. I am against giving false hope...but I am also against someone receiving false despair.  Already, we see at least 90% of babies diagnosed with prenatal chromosome disorders aborted. This number WILL go up with the newer and better prenatal diagnostic blood tests like Sequenom and verifi(TM), and that is precisely why and how prenatal testing will reduce medical costs.  

The real problem with this early knowledge is that parents are typically only given one side - the negative and worst-case medical/clinical side of things, and are not given the supports or accurate up-to-date resources parents need to make educated, well-informed decisions.  This is something that the Prenatally and Postnatally Diagnosed Awareness Act S1810 (Kennedy-Brownback Bill SB1810)  is suppose to help address.  Unfortunately, this was signed into law but no appropriations have been made to implement it. The law identifies the need for Physicians and health professionals to provide parents who receive a prenatal or postnatal diagnosis of trisomy 21 (Downs Syndrome), or other diagnosable congential condition such as trisomy 18 (Edwards Syndrome) and trisomy 13 (Patau's Syndrome), with updated, evidence-based information and resources about the condition. 
We love our Rebekah dearly and cannot imagine life without her sweet spirit! Our marriage has not fallen apart, our boys are not traumatized... in fact, our "humanity quotient" has grown a good deal and I know that my boys will grow up to be extremely compassionate, empathetic, and more "tolerant" than most of their peers. 

There is an article that I would love our followers to read. It is FIRST-PERSON: The Dark Side of Prenatal Testing by Penna Dexter from the Baptist Press news
"...Prenatal testing and the medical personnel involved are convincing far too many women to abort. We must change this."
I have to agree. Because, even if you are "Pro-Choice", you have to respect that receiving one-sided information is not going to result in a happy ending when a family terminates because they ultimately had no choice presented to them. I have been contacted by many women who were pushed into abortions because of genetic anomalies. When they see Rebekah, or one of many, many other children, surviving and thriving with their disorder, they have indicated that they feel robbed of that choice. My heart aches for these women. 
The article has many good points but here is another.
"There is a bill making its way through Congress, the Prenatal Nondiscrimination Act, which would ban sex-selection or race-selection abortions. This bill, or another, should also address the disabled. New Jersey Congressman Chris Smith, a champion for pro-life legislation, says children, whether they are "sick, disabled or healthy" possess "fundamental human rights that no sane or compassionate society can abridge.""
There are many things that could be done to help families make informed decisions for their children. One way is to help lobby for the above-mentioned Prenatal Nondiscrimination Act to take into consideration the disabled. Sex- and race-selection abortions are already included. And if you wonder why we should even have an act to protect again sex, race, disability-based abortion selections, just look at how prenatal discrimination cases are on the rise and costing taxpayers a lot of money. But, that is probably a whole long discussion in and of itself...


  1. Abortion is not healthy...there would be many problems face.

    Sheila Burnett

  2. I can speak for having a living child that finding the t18 diagnosis via amnio was like receiving a death sentence for Lance. Doctors convinced me to do the amnio to get more information to better treat Lance, however, when diagnosed there were no options bc of the research the exists with information. I have faced a lot of medical professionals who refused to treat my son because of his diagnosis including simple things such as antibiotics for an infection, a consult for a pulmonologist for sleep apnea. Even simple necessities like finding a dentist who is not afraid has been hard to find.. My thought on genetic testing is this: If the test came back poor, that would impose more restrictrions on the options for care that families would have on a national, state and local level. That would only make it more burdensome. Tests aren't always accurate and I think this would potentiate many more abortions. In the policy guideline written by AACOG, doctors are not supposed to take resuscitation measures for trisomy 13/18. So in my opinion, testing does not do more to give parents choices or make parents and doctors more prepared for their care until more research is done to show that kids like my child, who is six years old, never had surgery and is going strong (praise the Lord) can do well with proper medical care. I have always believed that people should treat each trisomy child as an individual and give them the best chances like they would do for any other child, and leave the rest to God.

  3. Susan thank you for your thoughtful blog. I didn't have prenatal testing after we were given the possibility of T 18 or T21. That was my choice based on my desire not to have a termination and also because I did believe I would get better care for my son if the diagnosis was with an uncertain pregnancy was difficult though and I wish I had known about the support I now receive then.
    What I want to mention is although I am not religious in a conventional sense I believe in life and because I had knowledge of another women who had been brave enough to carry her child with an uncertain outcome well before I had any children that knowledge gave me strength and made me think about issues like prenatal testing 10 years ago.
    Knowledge communication and ethics are very important topics thank you for putting them out there.
    Rachel, Lachlan's mum.

  4. Great post Susan! I agree with you whole-heartedly! However, I wasn't prediagnosed with Lane. When he was vaginally born, he required help because he wasn't breathing. A few hours later he was transferred to a children's hospital near-by. After he was looked at, the words trisomy 18 or trisomy 13 (which I had never even heard before) were now part of our vocabulary. The hospital ran a FISH test, we talked with the ped Cardiologist, and were told that Lane had a VSD and an ASD...that wouldn't be a problem to repair. THEN...when the FISH results came back with Trisomy 18 at 3 days old, EVERYTHING changed. We were told Lane was 'incompatible with life' and that he wouldn't live a week...a month at the most. We were told the best option was comfort care, the heart surgery was no longer an option, and that we could take him home on hospice if we wanted him to pass away at home with the family. WELL...Lane continued to grow stronger, he fought illness quickly, and today he is 3.4 years old with full Trisomy 18 and has an uprepaired heart condition. However, I am heart broken at this point because since Lane was denied heart surgery he now has pulmonary hypertension. We are running out of options for him to live a longer life. I do know that had Lane been prenatally diagnosed...HE WOULD NOT BE ALIVE TODAY. He was treated as a human being for the first 3 days of his life, and NOW...well, lets just say it's extremely difficult to find a doctor that doesn't see his diagnosis and simply just treats his symptoms. Thank you for bringing this discussion out in the open.

  5. Thank you. In an ideal world, a mother could better prepare by having the information before birth. Not so many mothers are as strong as others to shut out all the naysayers- in fact, most women feel pressure to terminate their pregnancies. Also, women who had a prenatal diagnosis report far more frequently that they "felt judged" by providers when they requested interventions. The chance of survival beyond one year is far less likely when there was a prenatal diagnosis.

  6. Thank you for stopping by The Simple Life. I added links to your blog and facebook group in my post. Thanks for writing about prenatal testing, too. I fear the day that autism (my daughter's diagnosis) can be determined prenatally. Autism is misunderstood, too, and I'm certain the elective abortion rate would be high. I have often wondered how we (as a society) can truly accept and support individuals with special needs after birth if we are so liable to dispose of them before birth. We need the world to get the message that all life is inherently valuable.

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