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 dictionary.com)
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, omission, underestimation
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...

...to an incredible little girl that cannot be defined by a label.

There IS HOPE for TRISOMY!!

Here are some sources of HOPE for Trisomy kids...

• Click here to read Stories of Hope for Trisomy.
• The Experience of Families With Children With Trisomy 13 and 18 in Social Networks - Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.  MUST HAVE ARTICLE FOR PREGNANT MOMS TO GIVE TO THEIR DOCTORS AND FOR ALL TRISOMY FAMILIES TO SHARE WITH THEIR DOCTORS/SPECIALISTS.
• Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: A Retrospective Study of 16 Patients
• Outcomes of Cardiac Surgery in Trisomy 18 Patients
• Pediatric Sub-specialist Controversies in the Treatment of Congenital Heart Disease in Trisomy 13 or 18 - "Cardiologists were more likely than geneticists or neonatologists to recommend intervention on all heart lesions other than single ventricle palliation which no specialists recommended. Parental wishes that "everything be done" significantly influenced all specialists' recommendations."  Empowered parents is a HUGE factor in surgical interventions. Nothing will happen without it! Don't wait for your doctors to okay surgery - you need to be your child's advocate. Given the data, if you do a few calculations, you will find that 850 doctors were involved in over 900 cardiac surgeries on Trisomy 13/18!!  And the doctors that responded only represent 1/3 of those who could have responded. WOW!