Top 5 posts of 2014

Juliet, on the day she was born

As we near the end of 2014, here’s a look back at the top posts from this year.

Due to the magic alchemy of Search Engine Optimization (SEO), many posts from 2013 remain some of the most viewed posts, Specifically, of the top 5 (or really 6) posts from 2013, the top two–“So many choices” & “When cell free fetal DNA isn’t“–remain in the top 5 of most viewed posts for 2014. Indeed, the latter one is one of the most commented-on posts still for the blog, with a comment being left just this week.

Here are the Top 5 posts that were written and posted in 2014:

1. American Idol Caleb Johnson, you just lost your biggest fan: This was the first post from the blog that went “mini-viral”–getting picked up by the Huffington Post and other websites, driving the views into tens of thousands. You can click the link to access those other sites mentioning the post. Despite Caleb calling some fans the “r-word,” he went on to win the overall competition. And, despite her father’s objection to his use of the “r-word” and Caleb not taking the opportunity to both apologize and raise awareness on how offensive the word is, Juliet still enjoys watching videos of Caleb’s performances from AI.
2. Your MaterniT21 test is NEVER positive: I wrote this post to make clear that none of the non-invasive prenatal screening (NIPS) tests ever return a definitive test result for Down syndrome or any other aneuploidy they test for. Not MaterniT21, Harmony, verifi, Panorama, InformaSeq, or any other NIPS tests. All they return are a recalculation of the chances of having a child with Down syndrome (or other aneuploidy), but they remain “a maybe.” Unfortunately, because NIPS labs like Sequenom, who offers MaterniT21, will report their test result as “positive,” it has caused widespread confusion among patients and practitioners alike (as reported in this investigative report 6 months after the post). Referring again to the SEO alchemy, this post is on the first page returned by Google when “MateriniT21” is searched–hopefully it clears up some confusion from those wanting to find out about this test.
3. Today Baby Doe Died: Baby Doe was a baby boy born in Bloomington, Indiana in 1982 whose esophagus was not connected to his stomach. Surgery could repair this, but he never received the surgery. This was because Baby Doe was also born with Down syndrome. His delivering physician, Dr. Walter Owens, advised Baby Doe’s parents that even if they repaired their son’s digestive tract, he would “still be a mongoloid.” Dr. Owens recommend that the parents withhold care from their son. Baby Doe languished for six days in a nursery in a hospital, until dying a very painful death. The injustice of this case resonated with readers: the post was shared over 2,000 times on Facebook.
4. #NeverAlone: In this post, I shared our diagnosis story–how we were told Juliet had Down syndrome and what information, or lack of information, we were provided. This was part of an on-line campaign in which other parent-bloggers shared their stories in the hopes of raising awareness of the need for information when given a test result for Down syndrome. Of the four major laboratories offering NIPS, 50%, Ariosa and Natera, accepted the offer by the National Center of giving them 2,000 books of Understanding a Down Syndrome Diagnosis at no cost, so that the labs in turn could provide to their providers and have the booklet available when a NIPS result was returned to a patient. Sequenom and Illumin/Verinata, the makers of verifi and the KFC-version of its test like InformaSeq, do not provide any patient information to be available when their test results are delivered.
5. Which is the harder choice?: Probably one of the biggest news stories of 2014 related to Down syndrome was the case of baby Gammy. Gammy was a fraternal twin born with Down syndrome to a Thai surrogate mother for an Australian couple. The couple retrieved the twin without Down syndrome, but left Baby Gammy. The story of Gammy sparked many news reports around the globe. A fellow parent-blogger, Leticia Keighley, shared a perspective that I thought ran counter to the conventional wisdom of what to do when finding out your child has Down syndrome. Keighley made the point that it’s actually harder to choose not to love them. I appreciated her perspective and am glad it made it into the top 5 posts from 2014. 

I hope you’ll revisit some of these posts. Thank you for those who helped push them into the Top 5. I look forward in 2015 to seeing which posts from 2014 that didn’t make the Top 5 this year may make it into the top posts after having more than a full year to be viewed.