Archive for January 23rd, 2007

Clara turns Eight!

Clara turned eight today! Happy Birthday Honey, you are so precious! Clara and I had the best talk last evening about the future! We were discussing the word “become” and Clara was sharing all of the things she might like to become when she grows up. The list included: vet, artist, speech pathologist, teacher, pizza maker, pediatrician and desk worker at Lifetime Fitness. I told her that I thought it was wonderful that she had so many interests and that her list would narrow down in plenty of time. She then paused and said, “I think I know how I’ll do this….I’ll be a Speech Pathologist on Mondays and Wednesdays (the days I work!), I’ll be a vet on Tuesdays and Thursdays, I”ll have Fridays off (both Greg and I have Friday’s off) and I’ll be a pediatrician on Saturdays!” How cute is that? I’m thrilled as she is the first of my children to want to do what I do!!

Here are some fun pictures from her special day!

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Great article by George Will

Golly, What Did Jon Do?

By George F. Will

Newsweek

Jan. 29, 2007 issue - What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.

Born in 1972, Jon has Down syndrome. That is a congenital condition resulting from a chromosomal defect that causes varying degrees of mental retardation and some physical abnormalities, such as low muscle tone, small stature, a single crease across the center of the palms, flatness of the back of the head and an upward slant to the eyes (when Jon was born, Down syndrome people were still commonly called Mongoloids). There also is increased risk of congenital heart defects, childhood leukemia and Alzheimer’s disease. Down syndrome, although not common, is among the most common congenital anomalies—47.9 per 100,000 births (compared with 77.7 with cleft lips or palates, which also can be diagnosed in utero, and which sometimes result in abortions).

As women age, their risk of having a Down syndrome baby increases. It has become standard practice for women older than 35 years old to be offered genetic counseling and diagnostic testing. But because of the higher fertility rates of women under 35, such women have 80 percent of Down syndrome babies. So new ACOG guidelines recommend that all pregnant women, regardless of age, be offered such counseling and testing.

The ACOG guidelines are formally neutral concerning what decisions parents should make on the basis of the information offered. But what is antiseptically called “screening” for Down syndrome is, much more often than not, a search-and-destroy mission: At least 85 percent of pregnancies in which Down syndrome is diagnosed are ended by abortions.

Medicine now has astonishing and multiplying abilities to treat problems of unborn children in utero, but it has no ability to do anything about Down syndrome (the result of an extra 21st chromosome). So diagnosing Down syndrome can have only the purpose of enabling—and, in a clinically neutral way, of encouraging—parents to choose to reject people like Jon as unworthy of life. And as more is learned about genetic components of other abnormalities, search-and-destroy missions will multiply.

Nothing—nothing—in the professional qualifications of obstetricians and gynecologists gives them standing to adopt policies that predictably will have, and seem intended to have, the effect of increasing abortions in the service of an especially repulsive manifestation of today’s entitlement mentality—every parent’s “right” to a perfect baby. Happily, that mentality is not yet universal: 214 American families are looking for Down syndrome children to adopt.

Jon, a sweet-tempered man, was born the year before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies. And he was born just as prenatal genetic tests were becoming routine. Since then, it has become routine to abort babies like Jon because they are like Jon. Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place.

America has, however, become a more congenial, welcoming place for its Down syndrome citizens who have escaped “screening.” On the second day of Jon’s life, the hospital’s geneticist asked his parents if they intended to take him home. Nonplused, they answered that taking a baby home seemed like the thing to do.

Jon was born at the end of the era in which institutionalization of the retarded was considered morally acceptable, but in what was still an era of gross ignorance: In the first year of Jon’s life, a network-television hospital drama featured a doctor telling parents of a Down syndrome newborn that their child would probably never be toilet-trained. But ignorance lingers. There are doctors who still falsely counsel parents that a Down syndrome person will never read, write or count change. Such doctors should not try to get between Jon and his USA Today sports section.

In 1972, the odds were heavily against Jon’s living as long as he already has lived. Just 25 years ago, the life expectancy of Down syndrome people was 25. Today, because of better health care, better mental stimulation in schools and homes, and better community acceptance, their life expectancy is 56.

Jon has a disability, but he also has some things most men would like to have—season tickets for Nationals and Orioles baseball, Redskins football, Capitals hockey and Georgetown University basketball. He gets to and from games (and to his work three days a week for the Nationals at RFK Stadium) by himself, taking public transportation to and from his apartment.

Jon experiences life’s three elemental enjoyments—loving, being loved and ESPN. For Jon, as for most normal American males, the rest of life is details.

© 2007 Newsweek, Inc. |  Subscribe to Newsweek


National Down Syndrome Congress Speaks Out

After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:
  

FOR IMMEDIATE RELEASE

 

Contact:           David Tolleson

                        770/604-9500                                                              January 23, 2007

 

ATLANTA – The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.

 

The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome.  Women under age 35 are also being screened, often without their full knowledge or consent.

 

Among the concerns cited by the medical doctors comprising NDSC’s Professional Advisory Committee:

 

  • The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in “at risk” pregnancies, in order to facilitate early terminations.  Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.

 

  • Based on ACOG’s figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.

 

  • All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing.  If patients decline certain tests, physicians and other medical personnel should respect the individual’s wishes and not overtly or covertly pressure patients to undergo undesired screenings.

 

  • Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information.  ACOG’s recommendations do not address this situation, nor how it will be corrected.

 

  • Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation.  Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome.  It is unacceptable that many obstetricians present negatives — and seem to emphasize pregnancy termination — rather than reporting the facts, which paint a much more positive picture.

 

  • Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill. 

 

NDSC Executive Director David Tolleson notes that “Down syndrome is a serious diagnosis; however we have seen families thrive.”  “We empathize with obstetricians who fear ‘wrongful life’ lawsuits,” Tolleson adds, “but the cure for that problem is tort reform, not preventing the births of a whole class of people.”

 

Jeff Mattson, a man with Down syndrome, agrees:  “People with Down syndrome want to live life to the fullest.”

 

According to Tolleson, “the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child.”

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I am proud to be a member of this group. Thank you for speaking out!