It's Not Always About You

My son, Potato, was born early.  When they woke me up after surgery, they said to me, "He's very small."  Not, he's gorgeous.  Or, he's breathing.  "He's very small."  There were a few times where they said, "We almost called you in."  "Call you in" is NICU speak for "it's time to say goodbye."  But each time they picked up that phone, he got better. 

They were preparing me for the future by being truthful and not getting my hopes up.  They wanted my time with him to be honest.  Not jaded.  And so sure, he has complications, but I don't ever regret giving birth to him.  Even if he hadn't made it, or if he was worse off than he is, I would have never regretted the decision to bring him into this world.

I really didn't want to write another dark post after Tuesday's sad book club post, but today's writing challenge over at Mama Kat's is to discuss a current event we feel passionate about.  And I could write about the oil spill and how horrible it is or how the health care debate angers me.  But that's not really what I am passionate about.

My passion lies in the advocacy of special needs children and their families. So, when I saw a recent story about certain medical research going on at Johns Hopkins University, my passion and subsequent anger got the better of me.

Johns Hopkins researchers are participating in a study to see if showing parents of high-risk preemies pictures of their child's potential disabilities will help those parents better make the decision as to whether to keep the babies alive or to let them go.  So rather than explaining the medical diagnoses that define most preemies, they are showing parents pictures of school-aged severely-disabled children.

The women were given a hypothetical scenario and asked to make a resuscitation decision following a standard prenatal counseling for extremely premature delivery. Then they were asked to make that decision again, but this time after also viewing photos of school-aged children with a wide range of outcomes, from normal development to severe neurological and developmental disabilities associated with severe prematurity.

“It can be hard for someone to imagine their newborn 10, 20, 30 years down the road,” says lead investigator Colleen Hughes-Driscoll, M.D., a neonatologist at Hopkins Children’s. “But with these powerful images, the data suggest we can help mothers during this critical time by making the often-confusing ‘doctor speak’ more concrete and by putting vague medical terms into real context.”

It's as if the doctors are saying, "See these horribly disabled children? Are you sure you want to be a parent to one of them?"

I think this is reprehensible for many reasons.  For one, this study was done on women being asked to end the pregnancy early to avoid having a child with these issues.  While I always support a woman's right to choose, this seems to me like a doctor-influenced decision as opposed to a woman's.

But mostly, I find this study so horrible because they don't at all factor in the lives of those children in the pictures. They are showing already vulnerable women scary pictures in an effort to end a potentially frightening experience of parenting a special needs child.

But what doctors aren't emphasizing is the way those parents will feel about their child.  Sure, not every parent wants to raise a child with severe disability, but those severely-disabled children are gifts to their families every single day.  Most parents of disabled children, between the tears of sadness and screams of frustration, will openly admit that they will NEVER regret giving birth to their children.

Because, they aren't just "disabled."  They are boys that are into frogs and dirt and trucks.  They are girls that love flowers and puppy dogs and the color pink.  They are beautiful children.

Again, if parents make an informed decision to terminate, that is their decision.  I do not fault them for that.

What I fault is a study done by doctors who would use suggestive media to influence that decision as opposed to embracing BOTH the positives and negatives of such a life-changing event.