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!

Trisomy Awareness - SHARE because you CARE!

The following tidbits of information for Trisomy Awareness month are brought to you by a passionate trisomy mom and friend, Alisha, who is part of the Hope for Trisomy organization. Visit our Facebook page to keep up with a month of facts, fun and inspiration!

This is Alisha with her full trisomy 18 son, Lane, who is 4 years old.

3/1/13: Today is the beginning of a very special month for us! Why you ask? It's the 3rd month of the year and so we celebrate MARCH as TRISOMY AWARENESS MONTH...with "tri" defined as, in intervals of 3. We will be bringing awareness to TRISOMY because awareness is the first step to education, and we will be educating by starting with the basics. When a child is born with a 3rd copy of a chromosome, then they have been born with a TRISOMY syndrome. When we are born, we all receive 23 chromosomes from each of our parents totaling 46 chromosomes. Your father's DNA decides what sex you will be on the 23rd chromosome he has given you. A TRISOMY syndrome can be made on any of the 23 chromosomes present in the body, which will then make the genetic makeup total 47 chromosomes. ♥  (I posted Day 1 on my last post, but I didn't want it to get lost. ;-)

3/2/13: On our 2nd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to learn who is more likely to become pregnant with a child diagnosed with Trisomy. Can you guess? Well...the answer is, any female who can become pregnant! Trisomy DOES NOT discriminate! Trisomy doesn't care what age you are (although there is a higher risk in women older than 40), what ethnic group, what demographic location, or how much money you make! Trisomy can happen to you, a family member, or a friend! Please help us in bringing awareness to the WORLD. SHARE because you CARE. ♥

3/3/13: On our 3rd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share the 3 different types of TRISOMY. The 3 different types being FULL, MOSAIC, and PARTIAL. The most common type is FULL Trisomy, and this means the extra chromosome occurs in every cell of the body. This type of Trisomy is not hereditary. MOSAIC Trisomy occurs when the extra chromosome is present in some (but not all) of the cells of the body. Like Full Trisomy, Mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division. PARTIAL Trisomy occurs when only "part" of an extra chromosome is present. Some Partial Trisomy syndromes may be caused by hereditary factors. It is important to note...while there are different types of Trisomy, this does not mean one is better for a child than another. With each type, there is a wide spectrum of severity. It is hard to say how the extra chromosome will impact an individual child from the genetic diagnosis alone. Share because you Care. ♥

Check out these Inspirational Trisomy Kids Stories brought to you by Hope for Trisomy.

Trisomy Awareness Shares

Let's make this month a successful one for raising Trisomy Awareness! Here are some photos to share and some information to pass along about trisomy.  Sharing a tidbit of information about trisomy from Hope for Trisomy's facebook page. Visit daily this month for more information about trisomy!

Today is the beginning of a very special month for us! Why you ask? It's the 3rd month of the year and so we celebrate MARCH as TRISOMY AWARENESS MONTH...with "tri" defined as, in intervals of 3. We will be bringing awareness to TRISOMY because awareness is the first step to education, and we will be educating by starting with the basics. When a child is born with a 3rd copy of a chromosome, then they have been born with a TRISOMY syndrome. When we are born, we all receive 23 chromosomes from each of our parents totaling 46 chromosomes. Your father's DNA decides what sex you will be on the 23rd chromosome he has given you. A TRISOMY syndrome can be made on any of the 23 chromosomes present in the body, which will then make the genetic makeup total 47 chromosomes. ♥

This is a facebook-sized banner made by a friend of mine who lost her T18 daughter. The footprints are her much-loved and much-missed Ellie Cushman. If you cannot resize this for facebook, pull the photo off of Rebekah's facebook banner: http://www.facebook.com/rebekah.budd

Boy version of the banner.

Facebook Trisomy Awareness profile pic for girls

Facebook Trisomy Awareness profile pic for boys

Please feel free to share Rebekah's photo, story, and information below in support of Trisomy Awareness month!
March is Trisomy Awareness Month. Trisomy is a genetic condition in which there is an extra chromosome in every cell. Down syndrome is trisomy 21. Many rare trisomies are deemed "incompatible" such as Rebekah's Trisomy 18. However, she is showing that she is, indeed, compatible with life. Many trisomy children are aborted or denied life-saving medical interventions. Even with Down Syndrome the abortion rate is >90%. We want people to know that these children are loved and deserve a chance, because every life has value!

Rebekah's Blog: http://buddzoo.blogspot.com/
Rebekah's Facebook Page: http://www.facebook.com/rebekah.budd
Hope for Trisomy: http://www.hopefortrisomy.org/
HFT on Facebook: https://www.facebook.com/HopeForTrisomy13and18

Do you have a trisomy story to share? Post it to Hope for Trisomy and we will add it to our facebook Tri-kids and blog!
Rebekah's Blog: http://buddzoo.blogspot.com/Rebekah's Facebook Page: http://www.facebook.com/rebekah.buddHope for Trisomy: http://www.hopefortrisomy.org/HFT on Facebook: https://www.facebook.com/HopeForTrisomy13and18
Do you have a trisomy story to share? Post it to Hope for Trisomy and we will add it to our facebook Tri-kids and blog!

Feel free to replace you facebook photo with this one in honor of Trisomy Awareness Month!

Let the world know that what the medical community calls "incompatible" and "futile" is met with a different definition by those who love and care for their trisomy miracles.  Please feel free to share!  A larger version is available at Hope for Trisomy's facebook page photos, along with word art for Conventional Thinking and Balanced Approach.

The following 4 posters were designed and offered freely by Eva's Gifts. You can visit her page to order them already made or to download a higher res copy. There is one for Joy, Life, Love and Hope - all featuring different trisomy children and one word their family chose to describe each one. Truly a beautiful project! If you visit her page, there is also a link to a picbadge awareness ribbon and some other banners.

Trisomy Awareness Month - Covert Medical Futility Policies

March is Trisomy Awareness Month. Because many of the rare trisomies are still considered "incompatible" and "futile" despite the growing number of "survivors", I wanted to kick off the month by highlighting a family who has helped raise awareness of covert medical futility policies. These policies exist in most hospitals and few states have laws that require disclosure. They result in passive euthanasia that is accepted by the medical community. It is not acceptable or reasonable to the grieving parents who have lost children due to these policies.

Back in April of 2012, I posted about the Kelletts' journey with their much loved and missed son, Peter.   Peter had full trisomy 18 and was doing well despite the condition. But the Kellett's 6 year old son died after an appendectomy.  An independent autopsy proved that the hospital's "cause of death" was not true and his death could most likely have been prevented. Or was it... encouraged / induced / precipitated?  He was most likely subjected to covert medical futility policies that put the power and decision-making solely into the doctor's hands as they allowed him to die by internal bleeding even when the family voiced their concerns about this possibility. Their journey led Mary Kellett on a mission to have medical futility policies disclosed.

In addition to Mary's efforts to change MN laws and make futility policies public knowledge, their story is now being publicized. There are efforts going on in other states as well to make it illegal for hospitals to withhold information about their Medical Futility Policies from families.

• Peter Kellett and Trisomy 18: Part I - excerpt from the article
  "The doctor said infection from appendicitis had strained Peter's heart to cause death. But the Kelletts weren't believing him. They ordered an independent autopsy, which found no infection. Peter had internally bled to death."
• Peter Kellett and Trisomy 18: Part II - excerpt from the article
  "She said, "All throughout Peter's life, from the beginning, the only help it seemed we got (from the medical profession) was to help him die. There was a huge difference between the way doctors treated Peter and the way they treated our other kids. It was like they couldn't see the value of his life. The doctor (at his birth) said Peter would never contribute to society. My argument has been that people with disabilities contribute to society in the most important way. They help us become better people. I call them 'teachers of our souls.'"If having known that particular hospital had adopted a futility of care policy, Kellett wouldn't have taken Peter there. She said parents had the right to know these policies existed. She said, "I have a feeling what's behind (these futility of care policies) is saving money. There's a lot of passive euthanasia going on, especially involving kids with disabilities. We're still devastated over how Peter died." 

Please become educated and aware of these issues that parents of trisomy children face regularly.  It isNOT okay to make death decisions based solely on a medical or genetic label and these practices need to stop. "Contribution to society" comes in many more forms than just working and paying taxes. Special needs children hold a very special place in this world - they teach us about our humanity, about unconditional love. To quote Mary Kellett, "I call them 'teachers of our souls.'"

Visit the Medical Futility Blog for more information.
Help support Mary Kellett's 501(c)(3) - Prenatal Partners for Life.  They offer support and information to families who choose to carry to term a baby with an adverse prenatal diagnosis and support for raising a special needs child.