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Friday, March 15, 2013

Misconception #1 - There is No Hope

Many people just don't believe the amount of discrimination and prejudgment that exists for children born with a medical label. When I explain that I personally know MANY families that have been denied medical, life-saving interventions for their trisomy child, I mostly get incredulous looks of disbelief.  And while we have never been outright denied intervention, it has certainly been discouraged and discussed along our journey. So I want to take part of TRISOMY AWARENESS MONTH just to do some educating about actual MISCONCEPTIONS that have affected us personally. I may throw in a few examples from friends along the way, but I am going to keep this mostly personal experiences so that no one can claim I am making things up. Our experience has been relatively good. So by the time you read through several posts of our personally-experienced misconceptions, maybe you will have a better idea of the big picture of what many families go through when trying to do their best for their trisomy child.
mis·con·cep·tion   [mis-kuhn-sep-shuhn]  (from
a false or mistaken view, opinion, or attitude; a wrong idea, impression; false appearance, false belief; error, misunderstanding

Synonyms: deception, delusion, error, fallacy, false impression, fault, illusion, inaccuracy, misapplication, misapprehension, misconstruction, misjudgment, misinterpretation, mistake, mistaken belief, misunderstanding, myth, neglect, omissionunderestimation
Antonyms: accuracy, certainty, comprehension, fact, perception, reality, truth, understanding

Misconception #1: There is No Hope for Trisomy

Rom 15:13 - I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.
There is no denying it - the statistics are not good. 90-95% of trisomy 18/13 babies will not make it to birth. Most will miscarry in the first 2 trimesters from chromosomal-caused complications. Many will be aborted just because they are imperfect and have a label. However, up to 10% will make it to birth! That is a glimmer of hope right there! There are records of trisomy 18 and 13 children living into their 30's. Yes, this is rare, but POSSIBLE.  Many that do survive may need heart surgery or gastronomy tubes to thrive. And the medical evidence shows that children ARE surviving these interventions!  

Despite the trisomy type, chromosome condition, or medical label, my take on it is this - for the babies that make it to birth, they have already proven something! There IS HOPE. Why not give them a chance? 

We were given details about Rebekah having the following issues, probably around the time we got our amniocentesis results (~19 weeks). 
  • choroid plexus cysts (cysts on the brain that are often markers of trisomy 18) & brain malformations - we would be at high risk for severe intellectual disability and seizures.
    => The cysts went away and the brain abnormalities are still there. We are praising God that at almost 4 years old, we still have no seizures and her brain MRIs have shown improvement in "white matter diffusion" issues and EEGs have shown improvement in synapse development and electrical activity.
  • a large VSD (ventricular septal defect - a hole in the lower portion of the heart)
    => Rebekah's VSD closed on its own at about 30 weeks gestational age! 
  • one kidney
    => Rebekah was born with TWO kidneys! One was just smaller than the other. However, at 1 year old during a routine (for trisomy 18 kids) abdominal ultrasound, it was discovered that the second kidney is actually full size, but it is a horseshoe kidney that wraps around her back and is connected to the "normal-looking" kidney. Turns out horseshoe kidneys are fairly common in trisomy 18 kids.
  • clenched fists
    => Rebekah's hands were clenched, and even today when she is upset or stressed, she tightens them up. However, we have always been able to open her hands up and they are not "frozen" into position. 
  • rocker-bottom feet
    => Rebekah does have rocker-bottom feet and, after 3 years of pushing for resolution, we are set to have surgery on her feet in May 2013!  We are confident that Rebekah will walk one day so we will do what we need to to give her the opportunity to achieve her milestones.
  • 2-vessel cord - carries much higher risk than the typical 3 vessel cord
    => Despite the 2-vessel cord, my cord flow remained good through the pregnancy.
  • very slow growth
    => Rebekah was born with a typical trisomy 18 birthweight - she was 4 lb 8 oz at 38 weeks when we were induced. She has gained weight well and followed a typical growth curve, even though she is at the bottom of it.
  • low amniotic fluid - This can indicate kidney and urinary tract issues and genetic defects, increases risk of fetus injury, can affect proper bone growth, and increases the risk of miscarriage and stillbirth and increase labor complications like cord compression (which is a big concern when you already have a 2 cord vessel).
    => We had low amniotic fluid during most of the pregnancy. This is atypical - usually polyhydraminos (too much amniotic fluid) is more common. 

We started out with no hope for Rebekah. Online resources were very different a mere 4 years ago. What was available - stories of heartache, articles supporting nonintervention, videos of families saying goodbye too soon, and old genetics textbooks being used to give us out-of-date information and lack of hope or support. We planned Rebekah's funeral before she was even born. We didn't prepare a room. We didn't buy clothes or baby things. 

But God gave us strength and HOPE to get through those dark days, and Rebekah proved to be a fighter.
Rebekah has come from an extremely medical fragile trisomy 18 infant... an incredible little girl that cannot be defined by a label.
Here are some sources of HOPE for Trisomy kids...


  1. Another misconception:
    Online resources were very different a mere 4 years ago. What was available was stories of heartache, articles supporting nonintervention, videos of families saying goodbye too soon, and old genetics textbooks being used to give us out-of-date information and lack of hope or support.

    1. I love anonymous posts. There is a false sense of power and strength when we can speak our minds without responsibility. Well, it's easy to disagree when you post anonymously, isn't it? So I have no frame of reference if you are a parent, a medical professional, someone from another organization... who knows? But that is NOT a misconception, it was the story we lived. There was not a lot of online support - especially support that wasn't moderated so that truth could overcome lies and deceit. It's easy for the medical community and others to believe that trisomy kids are better off dead, that parents suffer, that the cost is too great... That is the message that was, and still is given. However, social networking has tremendously helped families find each other and discuss MISCONCEPTIONS from a family view point.

      I stand by my statement. My sources during pregnancy were all doom and gloom. See my blogpost - The Experience of Families With Children With Trisomy 13 and 18 in Social Networks found at This publication was worked on 2011-12 BECAUSE OF social networking. I couldn't find many groups in 2009 when I started this journey, so I created my own group. Since it started, we have grown to over 1100 members. There are lots of other groups that have started since. There were a few that existed before, but the real issues were never really discussed publicly, or posts were moderated. I am proud to be part of the MISCONCEPTION-BUSTERS! Apparently you still have many, especially with regards to me.

    2. Three years ago, I was given my son's diagnosis by a wonderful, caring specialist. She tried to help me find support but cautioned me that even without lethal anomolies (like severe cardiac defects) our kids just didn't live, even though experts weren't sure why. She was amazed as I started to find little ones who were living. She had known of one, and not personally but only through word of mouth. It is through the groups like T18 mommies, and there wasn't much more than that even 2 1/2 years ago, that I found the strength and hope and love that I needed to help my own son

  2. I TOTALLY agree with your post. Until I found your blog when I was pregnant with Ellie... I was so discouraged. The official website that the doctor's office gave me was not at all helpful aside from obviously holding a different view of the sanctity of life. So when I came across your blog and you responded to my message (personally!!) and then hooked me up with the Facebook Group... I was actually able to form a game plan because I had accurate information from people who were living with T18 in real time. It made everything less scary. Especially after we talked on the phone:)

  3. I agree with everything you have said, my daughter was a second twin, born at 33 weeks gestation and weighing only 2lb 6oz. She was transfered to specialist NICU and required intensive respiratory support, she was able to be extubated quite quickly but required CPAP almost continuously, having frequent apneas without. When Connie was about 3 weeks old she was transfered to GOSH for PDA ligation - she recovered well and then slowly weaned off CPAP and oxygen - everyone was fighting for Connie and giving her the best possible treatment, until she was 5 weeks old - thats when she was diagnosed with full T18, suddenly things went from being very proactive and "Connie is progressing well" "Connie is doing everything we expect her to do" to the conversations of "need to think about whether you want to continue with Connies treatment" "Need to think about is you want Connie resuscitated" "Connie has a life limiting condition" etc etc, I thought I was alone in what turned out to be a fight to keep my daughter alive but I now know from excellent online support such as this that actually I am far from alone!! My daughter had sadly passed away now but she survived for 69 days and 10 of those were at home with her family - and that is because she had her heart surgery - heart surgery that she would have been denied had she been diagnosed earlier. If we never treat these precious children then how will we ever know their capabilites? Its not until attitudes change that we will see an improvement in statistics surely?

  4. Thank you ladies for posting your experiences. People find it hard to believe what we go through until they are in our shoes. We can only hope to kepp on educating and advocating so that other families after us will be able to make INFORMED DECISIONS about the care of their child. And since very few doctors have experience with multiple rare trisomy kids, we become the expert base to help provide that source of hope. Praying one day that will change.