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November 22, 2006

Comments

caite

"At the hospital, when they discovered on the scan that Down’s syndrome was a possibility, they very kindly offered to kill him for us."

What a chilling and so very true line.

Katie

When my youngest was being formed in the womb, and some blood work came back pointing to Down's, I was pressured a number of times to have an amnio test. But the risk, I felt, was too great. It was already a HORRIBLE pregnancy, but one I had no intention of terminating. At least, urged the nurse, have a Level II ultrasound before the 20th week. Then it's not too late to do something. !!??!!
She's now a perfectly healthy 3 year old, the love of our lives. Which is what she'd be even without the perfect health. But how many parents are coerced into jeopardizing their children's lives? How many parents are frightened into ending their children's lives? It's chilling, how afraid we are, of love.

Schultz

This is the second time in as many days that I have actually cried from reading a blog entry.

And that's a good thing.

c matt

It is incomprehensible. Where my daughter takes skating lessons, they have a special olympics program. A young man with Down's (late teens/early 20s) participates. He gets his skates out, puts them on just like anyone else (in fact, his skate suitcase is neatly ordered - far better than my daughter's). The guy can skate better than I can. I just cannot fathom how anyone could see his life as somehow not worth living.

Lynne

Amniocentesis is routinely 'offered' to women 35 years of age and older. There is a chance of miscarriage with it so I said no. What would I have done with the results if they said my baby had Down's? Nothing, so there was no need to have the test done.

Kathy

When I was pregnant with my 2nd child, the test for downsyndrom came back in the high risk range. Just like the postings above, they wanted to do an amniocentesis. Reading that it carried a risk of miscarriage, my husband and I knew it wasn't worth the risk. It wouldn't change anything (of course abortion was NOT an option,) all it would change is knowing sooner rather than later. We made up our minds to expect a downsyndrome baby, and waited for his birth. Jeremy is now 14 years old, athletic, handsome, considerate. He does not have downsyndrome. He is dyslexic, as is my nephew, who also tested in the high risk range pre-birth.

anon

Some people say and seem to sincerely mean that they want amnio only to be prepared because a child with Down's Syndrome may need more specialized medical treatment shortly after birth. Parents who otherwise hope for the benefits of a lower-tech birth (home, birth center, in a small hospital) might want to plan on a more medical setting. Not sure, but I thought I'd heard that amnio could be done later in the pregnancy at significantly less risk to the baby. If so, perhaps the timing and not the diagnosis is the real issue of pro-life concern.

S

As my husband and I left morning Mass yesterday, we spoke with a woman who was with her uncle, a Down syndrome man named Mickey. He is 52 years old. His niece told us the doctors had warned her grandmother that Mickey could not live past age 9! She has taken him in since his mother died. He is the light of her life. She said he enjoys serving Mass for the Bishop at his home parish. He carries the candle and he showed us how he does it. He prays constantly.
Do you ever wonder why you only see a few of these individuals around anymore? They have been aborted out of existence. The frequency with which Down syndrome births happen should make them a visible presence in our society. Instead, those heroic couples who stand up to the doctors and carry these children to term and raise them in loving homes are constantly set upon even in Catholic settings by people who actually say things like, “Didn’t you know he was going to come out like that?” It is a great loss to our society that these individuals are no longer allowed to be born. Amniocentesis is nothing more than a search and destroy mission.

Tom Piatak

Thanks for linking to this amazing piece.

Jimmy Mac

Ths author truly knows the meaning of "Happy Thanksgiving."

May we all know the same.

My parents were told by the doctors that my sister, while not being a Down's Syndrome child but nonetheless mentally retarded, would be luck to live to be 12 or 13. This past August she turned 64.

Nerina

I'm 38 weeks pregnant (and 39 years old) with my fifth child who also showed signs of DS on my routine ultrasound. We opted out of the amnio, had a level II ultrasound to check for any serious abnormalities that might require a higher level intervention at birth and then turned the matter over completely to God. It was not easy. I cried and begged God to take this cup from me (my first child is autistic, isn't that enough?), but in the end I heard Him say, "Trust me. I will take care of you, your family, your child." Of course, this baby may very well be a DS child. All I know is I'm supposed to love him. Like the author, we named him (Nathan) and now he is the long-awaited baby brother.

My doctor was actually very supportive of my non-amnio position and it was my family that shocked me with questions about "termination." Every time we've had a child people ask "why do you risk having another autistic child?" Sometimes the implied sentiment seems to be "don't expect sympathy when you had a way out of this situation."

MercyMe

Prayers for you and your family in this time of waiting, Nerina.

Thanks also for speaking to the opposite side of "choice," that those who honor the lives they have created have brought this on themselves and are not due any societal support.

anon

"Do you ever wonder why you only see a few of these individuals around anymore? They have been aborted out of existence. The frequency with which Down syndrome births happen should make them a visible presence in our society."

I've read this claim before, but is it true? Though older women are at a much higher risk of Downs, most Downs babies are born to younger women, simply because most BABIES are born to younger women. Younger pregnant women don't routinely undergo amnio, so lots of Downs babies are still slipping into the world under the radar, so to speak.

Donald R.McClarey

"Every time we've had a child people ask "why do you risk having another autistic child?" "

People can be cruel Nerina. On the other hand, people can be so wonderful. Today my Rotary Club had a presentation by a Rotary official in my Rotary district. She brought along her Downs Syndrome daughter who read a brief speech to the club. The impact was electric. Everyone in the room cheered and applauded the young lady. Two non-Rotarians present, one of them our caterer, wrote out checks for $100.00 each to aid Rotary in assisting Downs Syndrome kids. Our district is building a local center to assist in educating autistic kids. We parents of autistic kids, or kids who have any disabilities, can often feel isolated, totally alone. We are not.

God bless you and give you a safe delivery and a healthy baby! When my wife had our little girl 11 years ago, she was 37 at the time, her obstetrician, knowing our family history, asked Cathy if she was interested in an amnio. Cathy said there was no point, since the baby was going to term come what may. I have never been prouder of my wonderful wife! Our little girl was born with no disabilities except a tendency for hair-splitting arguments she inherited from me!

S

Anon,
I am speaking anecdotally as a teacher with a degree in special education. The population is simply not there in the numbers they were before 1973. I have no doubt you could find the statistics easily online.
S

S

Anon,
Another thought. The AFP test is considered a routine test now and it is used to detect Down syndrome as well. My sister was told her perfectly healthy daughter could be a Downs baby after having this test. She asked the doctor after delivery if he kept track of all the times the test was wrong. He did not answer.
S

anon

There is no question that parents often choose abortion after amnio reveals a Downs baby. My point is that this is a relatively small percentage of the total number of Downs pregnancies, since most mothers of Downs babies are under 35 and don't undergo amnio. (Also, more than a few mothers over 35, such as myself, decline amnio). Anecdotally, I see plenty of Downs kids at schools, playgrounds, the mall, and other public places. I think that the notion that these children are being aborted out of existence is an exaggeration.

Margaret

Wikipedia: A 2002 literature review of elective abortion rates found that 91–93% of pregnancies with a diagnosis of Down syndrome were terminated.

And as already noted, the AFP test is now standard pre-natal care. I have to sign a waiver with every pregnancy when I opt not to have it done with the other routine bloodwork.

Amy, thank you for posting this beautiful article. God bless us, everyone.

anon

"Wikipedia: A 2002 literature review of elective abortion rates found that 91–93% of pregnancies with a diagnosis of Down syndrome were terminated."

And, again, that does NOT mean that anywhere near 91% of ALL Down syndrome pregnancies were terminated, unless it is established that EVERY pregnant woman carrying a Downs child has undergone a diagnostic prenatal test.
That doesn't happen. The AFP test is not conclusive for Downs, and most pregnant women don't undergo amnio.

MercyMe

Most women in the US have ultrasound as part of their prenatal care (the majority of the women in the US receive some prenatal care), which specifically looks for indicators of Down's, including skin fold thickness on the neck and other indicators of normal growth. Regardless of AFP (which is incredibly innacurate and filled with false positives), there are other more specific and routine tests that show Down's before birth. Look at NIH rates per 1000 for Down's syndrome births in each decade and it will show you a trend toward aborting children with Down's syndrome.

Also, remember that rate of DS increase with maternal age, so proportionately the number of DS children with older mothers is greater. This population gets more screening for birth defects as routine care.

Kathy

***Do you ever wonder why you only see a few of these individuals around anymore? They have been aborted out of existence.***

Sadley, I'm sure you are right. It sent a chill down my spine!

With millions of babies killed every year just because they are "inconvenient" I'm sure the *diagnosed* DS babies don't stand a chance in most cases.

For 5 years I babysat for a DS little girl. She was a little ray of sunshine. Always sweet, gentle, happy. We all loved her. Often Mother Theresa's quote would come to mind ...that "all you have to do is look in the face of a downsyndrom child, and you will see Jesus."

Stacey

The AFP test is not conclusive for Downs, and most pregnant women don't undergo amnio.

You're right, it isn't conclusive. Which is why, if you get a positive result on your AFP (a test which you have to opt out of, signing waivers and such), the next step is an amnio. It's not like they say, gee, you're under 35, so in spite of a positive AFP, no amnio for you. If you don't want the amino, of course, they aren't going to force it on you, but the pressure will be there, and they will have informed you of the "risks." Trust me, the way prenatal care is ordinarily conducted in this country, very few Down's Syndrome babies "slip under the radar." Which is a sad statement about where we are.

felix hominum

Thanks for posting this. I'm the father of a child who lives with DS and a local advocate. When we were expecting Sarah Joy, we too were offered the "choice" of "terminating the pregnancy". Sarah Joy has more than lived up to her name.

Jim

We didn't know whether our fifth child would be a boy or girl so we had names picked for both. Thirza Ancilla Domini was about four hours old when we were told there is a 95% chance that she has Down Syndrome. Tests removed all doubt.

Thirza is an ancient Hebrew name meaning "sweet-natured" and is a variant of Tirzah, an Old Testament place name, the early residence of the kings of the northern kingdom. Ancilla Domini means "handmaid of the Lord". An attending physician asked us about her name and responded, "handmade by the Lord? That's a beautiful name." We did not correct him.

Thirza is now 28. She takes three dance classes each week and performs in the annual recital. She has been taking acting lessons for ten years and appears in two main stage musicals each year at an 1800 seat community theatre. She works one day each week at the theatre as an archivist. Her six nieces and nephews love her.

Life without Thirza? I can't imagine.

Ruth Joy

Thank you for this.

In my teaching days, Jake -- one of my fifth-graders -- told me this story about his mom. She had gone to a get-together of old girlfriends and before long they were taking out photos of their kids to show each other. One of them had a picture of a DS baby. All of the women were silent when they saw it. Except for Jake's mom, who spoke the truth and said, "What a beautiful baby." Even more important than what Jake's mother said was that Jake understood what had happened and was proud of his mother.

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