New Trisomy 13/18 Article

A new article about families of children with Trisomy 13 and 18 was published today in the medical journal Pediatrics. A huge thank you to Trisomy advocate and fellow Trisomy mom, Barb Farlow, for her years of hard work in bringing together Trisomy families and some compassionate members of the medical community to produce this research.
The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract
A blog post written by a well-known neonatologist regarding this article: http://neonatalresearch.org/2012/07/23/our-children-are-not-a-diagnosis-the-family-experience-of-trisomy-13-and-18/#comments

The Implications of Her Smile

In last week's Time magazine, Joe Klein wrote an interesting piece about Rick Santorum entitled "Rick Santorum's Inconvenient Truths." I usually enjoy articles written by Joe Klein and appreciate his perspective on a variety of political topics. He is not a conservative columnist and usually supports more moderate or liberal candidates. In this article, though, Mr. Klein says there is "something admirable about Santorum's near Tourettic insistence on bringing up issues no one wants to talk about." One of the issues that Mr. Klein discusses is Mr. Santorum's position on prenatal testing and his opinion that this leads to more abortions. Rick Santorum's daughter, Bella, who is three years old and has trisomy 18, has become the face of his stance on prenatal testing and abortion. According to Santorum (and the experience of my fellow trisomy parents), nearly 100% of babies prenatally diagnosed with trisomy 18 are encouraged to be aborted.

Prenatal testing is an important issue and carries more consequences than we are sometimes aware.  I do not personally oppose prenatal testing, but rather the lack of information and support given to women and families who receive a prenatal diagnosis. Parents who are already enduring the grief of having a child with this diagnosis are then faced with having to battle the medical community because of having a prenatal diagnosis.  After receiving a prenatal diagnosis as difficult and devastating as trisomy 18 and deciding to continue the pregnancy, many parents are denied medical interventions such as an echocardiogram to evaluate the baby's heart, a c-section to decrease stress on the baby, and resuscitation at birth since the child statistically is not expected to survive for very long.   Because we did not have a prenatal diagnosis of trisomy 18 with Julia, I was given a c-section (best for her compromised heart) and she was given respiratory support (she was on bi-pap for about 6 hours until she could breathe on her own). She was evaluated and placed in the NICU for observation.  Her heart and kidneys were evaluated. I do not know what our experience would have been like at our particular hospital if we had known before birth. However, I know many parents who have had to take on hospitals and fight for support. Some parents with a prenatal diagnosis have been able to meet ahead of time with NICU staff to find out their approach to babies with trisomy 18 and if they met resistance they had time to find another hospital. So, yes, prenatal testing is a big deal, or rather the knowledge than comes along with prenatal testing is a big -- a very big -- deal.

Although I am not a supporter of Rick Santorum for president, I am thankful for the debates being raised on behalf of his daughter Bella and all children with trisomy 18. And as Mr. Klein so eloquently states...

"I am haunted by the smiling photos I’ve seen of Isabella with her father and mother, brothers and sisters. No doubt she struggles through many of her days–she nearly died a few weeks ago–but she has also been granted three years of unconditional love and the ability to smile and bring joy. Her tenuous survival has given her family a deeper sense of how precious even the frailest of lives are.

All right, I can hear you saying, the Santorum family’s course may be admirable, but shouldn’t we have the right to make our own choices? Yes, I suppose. But I also worry that we’ve become too averse to personal inconvenience as a society–that we’re less rigorous parents than we should be, that we’ve farmed out our responsibilities, especially for the disabled, to the state–and I’m grateful to Santorum for forcing on me the discomfort of having to think about the moral implications of his daughter’s smile."

Trisomy 18 Awareness

Trisomy 18 has been in the news a lot lately because of a special 3 year old little girl named Bella who has Trisomy 18. Bella happens to be the daughter of Presidential candidate Rick Santorum. Bella was admitted to a local hospital over the weekend for pneumonia, which caused Mr. Santorum to cancel some of his campaign appearances. Bella is doing much better today and her dad is campaigning again. News organizations have been featuring stories about Bella and Trisomy 18. This is a tremendous opportunity to raise awareness for Trisomy 18 and to give good information about what this chromosomal disorder is and is not. We in the Trisomy community are interested in having the public know that
1. Our children are children first...children who have a condition known as Trisomy 18.
2. Children with Trisomy 18 can live for months and years. Their life expectancy cannot be predicted at birth.
3. Children with Trisomy 18 do not live lives full of suffering. The idea that these children suffer is commonly cited by neonatologists and obstetricians although it this is not supported by medical literature or anecdotal experiences from the MANY Trisomy families out there.
4. Children with Trisomy 18 can indeed have a good quality of life.

For more information please see the following links:

http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis

http://www.trisomyhelp.org/WHAT-IS-TRISOMY-.html


To view some of the current news coverage centering on Bella Santorum and/or Trisomy 18 see the following links:

http://www.thedailybeast.com/articles/2012/01/31/feeding-tubes-nicu-one-on-one-care-susan-hatfield-talks-about-living-with-his-trisomy18-baby.html -- this article was written by the mom of a 5 year old boy with T18.

http://bostonglobe.com/lifestyle/health-wellness/2012/02/01/bella-santorum-and-trisomy-care-has-shifted-for-genetic-disorder/k5ZH7Zxoi0q5hkJRsphs6M/story.html

http://www.pbs.org/newshour/rundown/2012/02/santorums-daughter-recovering-nicely-but-from-what.html

http://www.cbsnews.com/8301-504763_162-57368121-10391704/trisomy-18-in-spotlight-after-rick-santorums-daughter-bella-hospitalized/?tag=mncol;lst;1

http://abcnews.go.com/blogs/health/2012/01/29/what-is-trisomy-18/

http://www.washingtonpost.com/blogs/the-checkup/post/bella-santorum-has-trisomy-18-what-is-that/2010/12/20/gIQAxrOVcQ_blog.html

http://www.huffingtonpost.com/2012/01/30/trisomy-18-bella-santorum_n_1241671.html


To learn more about children with trisomy 18 and their families see the links under "My Blog List."