Wednesday, June 26, 2013

Making a Prenatal Diagnosis a Less Scary Place

I admit, I did not have a prenatal diagnosis for Samantha.  But I do know many, many people who did with their children with Down syndrome.  And the only real differences between knowing while your baby is still in-utero vs. finding out after they are born are a) that you can have more time to prepare for your baby's arrival and be aware of the sorts of things you can expect and b) that you can still have an option to terminate the pregnancy. 

Sadly, termination is the most popular option, especially in this day and age when prenatal testing is so simple and non-invasive, able to be conducted at a staggeringly early date, and so much more accurate than in the recent past.

And, sadder still, I strongly suspect these termination rates would be far, far lower upon the announcement of a prenatal diagnosis, if the medical professionals giving this life-altering news to an expectant mother could give it not with the doom and gloom of an old medical journal, not with the outdated list of what a child with trisomy 21 can't do, not with bleak, institutional photos of a depressing and isolating past, not with the primary next steps being the scheduling of a termination procedure.  The termination rates would be far, far lower and the expectant mothers could begin to prepare for a possible real future for their as-yet-unborn child, with a real place in their family if real, up-to-date, fair and balanced, positive and accurate information could be passed along.  Real facts.  Real photos. Real resources.  Real life.

Which is a beautiful thing.

The facts are that the vast majority of families of people with Down syndrome lead very happy lives, that the vast majority of siblings of people with Down syndrome say that their sibling with Ds has made them better people, that the vast majority of people with Down syndrome love their lives and are truly happy. 

Lettercase.org has produced a fantastic resource that should be utilized by all medical professionals who could ever be in the position of delivering a Down syndrome diagnosis and furnished to and read by all expectant parents who have received one.  Understanding a Down Syndrome Diagnosis is available to download free on their website for parents, and in hard-copy for medical professionals.

For this week onlySevenly.org has paired up with Lettercase to donate $7.00 from each and every purchase on their site to ensure that these booklets can continue to be produced for free and spread out into the medical community and to expectant parents across the country.  Please visit the site and check out the great array of t-shirts and jewelry, and make your purchase today!  The offer is for this week only, ending on Saturday. 

Help everyone to see what we, as the parents of children with Down syndrome, already see.  That our lives are ordinary, that our children are contributing members of the community, that we are part of this amazing club we never knew we wanted to be a part of, that our children with Down syndrome have made us and our family members better people.

That life is a little different than what we'd expected, but that life is good.

I promise! 

3 comments:

Chromosomally Enhanced said...

so this has been on my mind for a while...the prenatal testing...i knew at 5 months with a ultra sound...i did not do the prenatal testing...and truly think that if the doctor would have NOT told me all bad and ignorant information i would not even thought about abortion...but it was what they offered first...and second was the long life of raising my girl...and google did not help...what helped was the REAL blogger world of real people giving good solid information...I want there to be a change in the medical world on how they present information to parents..doctors that understand and know...i am frustrated that i still get misinformation from people and have to set them straight..smiles

teal915 said...

Love Lettercase, and its great that Sevenky is doing this.

Jenny said...

Great post Becca, and excellent links too!