Friday, September 26, 2008

It passed! It passed!

The Kennedy-Brownback bill, also known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act and co-sponsored by John McCain, was passed by the Senate on Tuesday and the House joined them yesterday. Now on to the President and it will be law - woohoo! This is an amazing collaborative effort between advocates on both sides of the abortion issues. Those that are pro-life hope that more babies prenatally diagnosed will be born rather than terminated and those that are pro-choice are creating a more informed and thus empowering choice for women. Having experienced a prenatal diagnosis, I can personally attest to the fact that the doctors delivering the news do NOT provide accurate up-to-date or supportive information. A woman is not making a true choice when the only option explained comprehensively is abortion.

Medical professionals receive little if any training on persons with disabilities in medical school or during their residencies. My OB pointedly said that he knew little about Down syndrome because that is the pediatrician's realm. However you don't see a pediatrician if the baby is never born. Any info pulled together while pregnant tends to be about the increased risk of certain medical conditions associated with DS. I know the doctors have liability issues and need to inform their patients of all these negative possibilities to cover themselves. However they completely neglect to inform their patients of all the positive probabilities or of all the support systems and resources available. They leave a woman scared out of her mind, pregnant with a condition rather than a loved and wanted child. It is no wonder that termination rates are over 90% after receiving a prenatal diagnosis.

My genetic counselor offered to schedule an abortion for me. She even recommended that we go ahead and make the appointment with the knowledge that I could cancel it later should I "change my mind". She made that option easy. She did not offer to schedule an appointment with a social worker, a special education teacher, an Early Intervention therapist, or even a parent of a child with Down. I can reflect now that I had NO accurate representation of what life would truly be like with my son. That was a complete disservice to me as a patient and as a woman trying to gather as much information as possible to make the right decision for my family.

My doctor had diagnosed hydrocephalus, cardiac calcification, an enlarged abdomen, a misshaped bladder with possible kidney reflux, among other things throughout the pregnancy. Each ultrasound seemed to find something new. Then 3 weeks before the due date, the blood flow and pressure to the baby through the umbilical cord was decreasing. He appeared underweight and there was also suspected meconium aspiration. Labor was induced and with each contraction his heart rate dropped. A bed was prepared for Caden in the NICU (Newborn Intensive Care Unit) whose staff was present in the delivery room, ready to whisk my baby away. Instead Caden came out pink and screaming. He got a 9 on his Apgars, was a pound heavier than they predicted and had none of the expected problems. He did have the extra chromosome and he did develop jaundice which kept us in the hospital for five days but he didn't spend one second in the NICU. I very much respect my OB and know he was doing his absolute best for us. Still, if he could be so wrong about Caden's prognosis in the short-term, how could he be expected to provide a long-term prognosis when I first received the diagnosis? He referenced "quality of life" several times with the insinuation that my son's might be compromised. Yet I could feel this little guy kicking, turning and hiccuping in my belly and nothing felt out of the ordinary. Thank goodness I listened to my pregnant gut and not my well-intentioned though ill-advising doctor. I shudder to think how close I came to losing the best thing that ever happened to me.

This bill is a step to remedy this whole process. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests.

The political parties might be jousting over the financial bail-out but I am thrilled to see them pull together to decidedly give women the power of a choice that is informed. This is politics working for the people. This gives me hope.


Anonymous said...

Hi! I've been reading your blog for quite awhile, now. I love seeing everything that Caden is up to! My daughter is 22 months and has Down syndrome. She amazes me constantly.

Would it be ok to quote this entry on another website? I think you really summed up the bill and pre-natal diagnosis well.

Thanks for sharing your journey with us!


Jessica said...

Hi Wendy,
Thanks for reading my blog and leaving a comment. Feel free to share whatever you'd like from my ramblings. And good luck as your daughter turns two. It is such a fun age and the increased mobility is so exciting!

Victoria Miller said...

Thank you so much for sharing in the sweet victory we all share in as parents of
children with Trisomy conditions with the passage of the Prenatally Diagnosed Conditions Act. The coalition, in which all of us played a role, not only demonstrated the power of parents coming together across the partisan divide of pro-life/pro-choice beliefs, but also the power of advocacy groups representing different Trisomy chromosomal conditions coming together to advocate for change in more powerful numbers than we could muster alone in our individual silos. Although each of our children is unique and affected differently by their "extra" chromosome and it's genetic heritage, we all share a common goal of wanting our fellow parents in years ahead who will be learning prenatally about their own child's disability, to have the benefit of our experience and knowledge and compassionate companionship as parents with children of our own with these conditions. Caring for newly-diagnosed parents and their children with a disabling chromosomal disorder should never be a partisan issue. As our we say at the Trisomy 18 Foundation says, "Every child . . . No matter how fragile their life, or brief their days, forever changes our world." This is a victory for all of us together!

Victoria Miller said...

Sorry didn't leave my contact info the right way.

Trisomy 18 Foundation can be found at: