Monday, May 5, 2008

"I see perfection"

I heard about this touching story over the weekend. Alaskan Governor Sarah Palin gave birth to her 5th child, a son, Trig Paxon Van Palin, who was diagnosed with Down Syndrome during Palin's pregnancy.

"I'm looking at him right now, and I see perfection," Palin said. "Yeah, he has an extra chromosome. I keep thinking, in our world, what is normal and what is perfect?"


But unfortunately, most parents do not share her sentiments, and sadly most will not choose life for their child. Over 90% of Down Syndrome children are diagnosed prenatally and then aborted, over 90%! Is this because parents think they have the "right" to a healthy child? Or is it because they are afraid to really love?

As a mother who has personally faced a very devastating prenatal diagnosis, I know the fear that comes when a doctor tells you the "bad news." The fear is literally overwhelming. It takes every ounce of energy just to breath, and the thought of giving more, of really loving, can seem impossible.

But with grace all things are possible.

I applaud the Palin's in their courage to not only love their baby boy, but in their courage to open themselves up to the public, and give our very broken and messed up world a beautiful example of God's love. It comes at a time when we really need it. I only wish more of our public figures could do the same.


Anonymous said...

I too was touched by that story and, sadly, realize that many others will not get it. Or will think that this one family is unique in being able to welcome their lovely son.
Prenatal diagnosis has had a huge impact. I rarely see a child or young adult with Down's syndrome. Although we do have a family with an adult daughter with Down's at our parish. My mom was a special ed teacher in the 60's when special ed primarily meant a classroom of children with Down's. Even after she left teaching (to raise us), we participated at our parish with Masses and social events for young adults with Downs. Even as a teenager, I could see that while different from the "rest of us," these were special people.
When I was pregnant I did have the "triple screen" testing done. But my husband and I discussed it first and completely agreed that we did it only so we could be prepared if there was an issue. I have a friend who struggled to conceive and she wouldn't have the test because she wouldn't "do anything anyway." But, personally, we decided that having time to prepare ourselves of any problems, to learn, and to process the information would be valuable. I also have a friend whose son had a prenatal diagnosis of CF. She was able to meet with specialists before he was born and had plenty of information. He is doing well now at age 7. They have discovered that he has a mild form (that hadn't been identified before). But without the diagnosis, he would not have gotten the early specialist care that may have saved him.

Kat said...

Elizabeth, you touch on a great point; prenatal diagnosis has comes with its own set of blessings and curses. We, like Red, had a daughter with anencephaly, which is a neural tube defect that prevents the brain from developing as it should. Anencephaly is and untreatable and fatal condition, so we knew that our daughter would die either at birth or shortly after birth. We found out about Lucy's condition at our 20 week ultrasound, and for us there was never a question of whether or not we would carry her for as long as we could. In our case, knowing about Lucy's condition before her birth was a blessing because we were able to spend the rest of the pregnancy bonding with her and preparing for her birth. We wanted to be able to take advantage of every moment that we had with Lucy after her birth, so we planned all of the details in advance, and were also blessed to have many family members and wonderful friends be with us to meet our daughter. Had we not known of her condition, we would not have been able to do this.

Sadly, the vast majority of parents who receive a prenatal diagnosis of anencephaly decide to terminate (98%), and they never get the chance to hold their baby in their arms or say "good-bye" like we did. We feel immensely blessed for all of the time that we had with Lucy - even though she was stillborn, it was important for us to hold her, kiss her, bathe and dress her, and then, when the time came, to hand her over and say our farewells. Nothing about the experience was easy, but it was natural and good, and our family wouldn't be the same without Lucy as a part of it.

One of the problems with prenatal diagnosis lies largely with the advice given by nurses and doctors when the news is "bad". The doctor on call the day of our 20-week ultrasound strongly advised us to "see her friend" at another hospital who could "take care of everything for us." Even after we told her that we would be carrying our baby to term, no questions asked, she continued to hammer home the point that our baby could not live outside of the womb, that there was no chance of survival...In her mind, there was no point in continuing the pregnancy because the outcome would certainly be death. The picture that she painted was grim, and some of the information that she gave us was inaccurate. Luckily, we already knew a lot of the facts about anencephaly, but many parents who receive a prenatal diagnosis do not know the facts already and have to rely on what the doctors tell them. Unfortunately, many parents are talked into terminating their pregnancies in a haze of confusion and extreme sorrow, and the effects have been devastating for many families and for society as a whole.

Please understand that I am not trying to say that all doctors are uncompassionate and misleading - we encountered many wonderful nurses and doctors along the way, and for them we are truly thankful. But the sense that I've gotten is that the medical profession in general has taken the opinion that parents "deserve" a healthy baby, and that a child has a right to be born healthy; thus, if there is a prenatal diagnosis to the contrary, it is in everyone's best interest (the parents' and the child's) to terminate the pregnancy. This, of course, is also a pervasive attitude in our society...Sad, but I fear that it's true.

Our journey with Lucy would have been much harder had we not had the love and support of so many wonderful friends and family members; it saddens me to know that many people do not experience the same level of encouragement and support, and I pray for them every night.

One last point, and then I'll stop :) I fear that our society no longer knows how to deal properly with suffering. We do not know how to be with others in their suffering, and when suffering comes our way, we feel that we are all alone in our plight. We are so uncomfortable with vulnerability and weakness that we push it away at all costs. This is not a healthy state of affairs for individuals, families, or society in general...

Saint Mary, Mother of Mercy, pray for us!

Sandra said...

Thanks for the information! My older (30 years old) sister has Downs. The abortion rate for these special babies makes me so sad. That's why I think families like mine need to let others know what blessings they are! I also blogged on this today after seeing the story of Alaskan Gov. Sarah Palin, and gave tips on how we can support families with special needs children.

B-Mama said...

I had the opportunity to work with a Downs child, Micah, when I taught 1st grade Sunday school while in high school. What a precious boy Micah was back then (and still is!) To see his family and other children continue to delight in him is heavenly! In all my teaching experience I have never met a happier student... Thanks be to God for such a testament to His Love!!!

And thanks for sharing this beautiful story Red!

Maria said...

I strongly agree with Kat's point about the terrible advice often given to parents from their doctors at their ultrasounds. My 18month old daughter, Lucy, has hydrocephalus, a treatable condition with generally mild symptoms. Lucy is a little delayed in her gross motor skills, but otherwise a total normal, healthy little girl. After reading the stories of several other parents with children with hydro, I was shocked at the number of them told to terminate their pregnancies due to a simply diagnosis of hyrdocephalus. Many of these parents were told all kinds of misinformation about hydrocephalus and the lifestyle their child would have. It's been a very eye-opening experience.

Kat said...

Maria, I'm so glad to hear that your Lucy is doing well! Praise God! I feel a special connection to you as our first daughter's name was Lucy, and our second daughter's name is Maria :) Thank you for your comment and for your willingness to share your family's story.