: [IDSFparents] Indy's Child Magazine cover

[Guest guest]

I am forwarding this w/permission from Jan Huffman…this is the

story behind the current Indy’s Child magazine issue:

I copied and pasted the article from the magazine below Jan’s

letter.

kathyR

-----Original

Message-----

From: IDSFparents

[mailto:IDSFparents ]

On Behalf Of Jan Huffman

Sent: Friday, June 30, 2006

9:28 PM

IDSFparents

Subject: [iDSFparents] Indy's

Child Magazine cover

I thought

I would post this before everyone sees the cover and

accompanying " tag line " on the Indy's Child July edition. IDSF

purchased an opportunity for a cover on Indy's Child magazine last

year at 's Upside Down Ball. I don't have specifics as to how

the month of July was chosen, but Busch, our Exec. Dir. sent

out email notices about a photo shoot, and a shoot was scheduled for

June 9, the same day as the DADS golf outing. Since 's

article was previously published by Indy's Child about Ds and IDSF,

they told that no article would accompany the cover shot. We

were told it would be about " Summer Fun " , and the picture was shot

at the Holiday Inn waterpark.

The July edition came out today. I am devastated.

Indy's Child parenting magazine decided to use our kids on their

cover, Nash, and Mackenzie, in a nice summer pool setting,

not to promote summer fun, but to use them for the " Maternity Issue "

with a big tag line by their heads " Understanding the Results is Key

for Prenatal Screening Tests " topped off with an article written by

a woman that had prenatal testing but said " We're fortunate. Our

child was born without Down syndrome " .

No " other side of the story " to assist with information from a

parent, who has a child with Down syndrome, no information about the

Indiana Down Syndrome

Foundation contacts for parents that have

positive results for Down syndrome if they chose prenatal testing………

nothing. Nothing to help provide accurate information to the parents

who receive a prenatal diagnosis.

I feel our kids were used, for all the reasons we fight against. I

feel all the efforts we put forth for inclusion and advocacy were

just flushed down the toilet. I am devastated on a personal level,

because I was led to believe this was a positive spin on our kids,

and something I could cherish as something wonderful for our son and

our local Ds community.

I am trying to get past the emotions but can't- Jeff has been on the

phone to gather input from , Steve Simpson, and those at our

local ARC on how to respond, but it has to be in a positive way.

Right now I feel anything but positive…………

Understanding the

Results is Key for Prenatal Screening Tests

by Amy Cahill

July 01, 2006

It was two days before Thanksgiving when the call came from

my obstetrician’s office.

“Your test results came back positive for Down

syndrome,” the nurse said. “I wanted to see if you’re going

to be home tomorrow so we can try to get an appointment with a

specialist.”

I could not believe this was happening to me. I knew the

triple screen blood test I’d taken had a five percent false positive

rate, but when I decided to take the test, I never thought it would affect me.

When I was pregnant with my son, my test results showed that

I had a one in 2676 chance of having a child with Down syndrome. I opted to

take the test during my second pregnancy because I wanted similar reassurance.

One in 42 was not reassuring.

As I waited for the nurse to call back, I called my husband

at work and filled him in.

“That still means that out of 100 babies only two will

have Down syndrome,” he said, trying to calm me down. I was not

comforted.

When the nurse called back, she told me that the first

available appointment with the genetic counselor was Monday morning. The plan

was for me to visit my doctor’s office first and do a regular ultrasound

to be sure that the dates were right on my pregnancy. If they were, my husband

and I would go to the specialist for an afternoon appointment. There we would

be offered a more detailed ultrasound, genetic counseling and amniocentesis. If

the dates were incorrect, my doctor would call the lab and have the test

results recalculated based on my new due date.

I pleaded with the nurse not to make me wait all of

Thanksgiving weekend to learn if the dates were wrong and she agreed to squeeze

me in for the regular ultrasound the next morning.

After a sleepless night, I had decided that if the dates were

right, I was having amniocentesis. I had to know for sure.

Fortunately, the ultrasound showed the baby’s

development was one week behind where it should have been based on my last

menstrual period. That meant the test was done at 14 weeks, one week too soon.

We redid the test the following Monday and the new results showed a one in 648

chance that the baby had Down syndrome. That was helpful, but still not what I

had hoped for.

I’ve asked myself again and again if I had known ahead

of time what the outcome was going to be, would I still have taken the test? I

would. Had my daughter had Down syndrome, I would have wanted to know ahead of

time so I could prepare.

However, I should have been better educated about the

prenatal screening options available and what the test results really mean.

There are two types of prenatal testing

available—screening and diagnostic. Screening tests assess your risk of

having a child with a birth defect such as Down syndrome, a neural tube defect

or cystic fibrosis. Diagnostic tests determine whether the baby you are

carrying actually has the defect.

FIRST TRIMESTER

First trimester screen

A new test called the First Trimester Screen assesses a

woman’s risk of having a child with Down syndrome or Trisomy 18.

An extra chromosome, #21, causes Down syndrome, which results

in mental and physical abnormalities, including mental retardation. Approximately

one in 800 babies is born with Down syndrome. A woman’s risk of having a

baby with Down syndrome increases as she ages.

Trisomy 18 results when the baby has an extra chromosome,

#18. Trisomy 18 causes serious mental retardation and physical deformities

including heart defects. Only one out of 10 babies affected by Trisomy 18 will

live past one year.

The First Trimester Screen is done between the 11th and 13th

week of pregnancy and includes drawing a blood sample from the mother and a

special ultrasound. At the lab, technicians measure the levels of two proteins

produced by the baby and the placenta, PAPP-A and human chorionic gondotropin

(hCG). The ultrasound, known as a nuchal translucency, measures a fluid-filled

space in the back of the baby’s neck. Extra fluid can indicate problems.

The screen detects roughly 83 percent of Down syndrome cases

and 80 percent of Trisomy 18 cases.

The advantage of the First Trimester Screen is that the

mother often learns whether the baby is at an increased risk of having a birth

defect before anyone else knows she is pregnant, says Dr. Pell Abernathy,

a maternal fetal medicine specialist at the Indiana University School of

Medicine.

“Any pregnant woman could potentially benefit from

this,” she says.

Abernathy said the screening is popular on the East and West

coasts, but has been slower to catch on in the Midwest.

Dickerson, a certified genetic counselor at St.

Maternal Fetal Medicine, says most women opting for this screening are

over 35, but the test is available to any pregnant woman. However, insurance

companies may be reluctant to pay for the test for women who are not considered

high risk.

CVS

Chorionic Villi Sampling, CVS, is also performed during the

first trimester between 10 and 12 weeks of pregnancy. During CVS, a doctor

withdraws a small amount of tissue from the placenta with a catheter inserted

through the patient’s cervix or abdomen. The tissue is then sent to a

laboratory where the baby’s chromosomes are analyzed.

While there is a 1 to 2 percent chance the mother’s

tissue may contaminate the sample, CVS is generally considered a diagnostic

test. The baby’s sex and any chromosomal abnormalities can be firmly

established by the test. CVS carries a 1 to 3 percent risk of miscarriage.

SECOND TRIMESTER

Integrated Screen

The Integrated Screen is also relatively new. It combines the

results of the First Trimester Screen with a second blood test done between 15

and 22 weeks of pregnancy. The results are not available until after the second

blood draw.

The Integrated Screen offers a significant increase in

accuracy and will also screen for neural tube defects like spina bifida.

The neural tube develops into the baby’s brain and

spinal cord. If the tube does not close completely, an opening remains along

the baby’s spine or head. Neural tube defects affect one to two babies

out of every 1000.

The Integrated Screen detects approximately 92 percent of Down Syndrome cases, 90 percent of Trisomy 18 cases

and 80 percent of open neural tube defects.

Triple or Quad Screen

The Triple Screen or Quad Screen, also known as maternal

serum screening, is the test most women can expect to take in their

doctor’s office. The screening test is done between the 15th and 22nd

week of pregnancy and requires a sample of the mother’s blood. The

optimal time for the test is between weeks 16 and 18.

Once the blood sample is drawn, it is sent to a laboratory

where technicians measure the level of three or four pregnancy hormones. The

Triple Screen looks at alpha-fetoprotein, hCG and estriol. The Quad Screen also

looks at the level of Inhibin A.

The Triple Screen catches about 70 percent of Down syndrome

cases, while the Quad Screen increases your chances of detection to about 81

percent. Both tests detect about 80 percent of Trisomy 18 cases and open neural

tube defects.

The screening is considered positive for Down syndrome if it

shows a one in 270 chance that the baby will have the defect. At age 35, a

mother’s risk of having a child with Down syndrome is 1 in 270.

Basically, a positive Triple or Quad Screen entitles a younger woman to the

same right to have additional tests that a pregnant woman over 35 is given as

part of her standard care.

“It’s important, I think, that people realize it’s

not a diagnosis,” Dickerson says.

The screening is considered positive for a neural tube defect

if the alpha-fetoprotein level is above 2.5 and a 1 in 100 chance is considered

a positive for Trisomy 18.

Approximately 5 percent of all positive Triple or Quad

screens are false positives.

“You want to try to pick up as many as you can,”

Abernathy says. “You don’t want to be in that 8 percent you miss

that may have been falsely reassured.”

Detailed ultrasound

If a screening test comes back positive, the next step is

usually a detailed ultrasound where highly trained technicians look for soft

markers that indicate a problem with the baby. Detailed ultrasounds are

routinely offered to women over 35 or couples with a family history of birth

defects.

During the detailed ultrasound, the technician looks for

problems such as heart defects or abnormal growth which indicate the baby may

have a birth defect. An ultrasound can detect at least 50 percent of babies who

have Trisomy 18, Down syndrome and neural tube defects.

“It’s a more detailed ultrasound than what you

would have in your OB’s

office,” Dickerson says.

Amniocentesis

The best way to diagnose a genetic defect like Down syndrome

is amniocentesis, which is 99.8 percent accurate. The test is generally done

between 15 and 22 weeks, although it can be done at any point during pregnancy.

During amniocentesis, a doctor uses an ultrasound to visually guide a thin

needle through the abdomen and into the uterus to withdraw a sample of amniotic

fluid.

“We try to be where the baby’s not, where the

placenta’s not and where there’s a good pocket of fluid,”

Abernathy says.

She adds that amniocentesis hurts about as much as having

your blood drawn.

The fluid is sent to a lab where skin cells from the baby are

grown in a Petri dish and examined to determine the baby’s chromosome

composition. The test, which generally takes between one and three weeks,

determines whether there are any chromosome defects and shows the baby’s

sex.

In a relatively new development, the laboratory can put

special markers on certain chromosomes and have preliminary results within 1 to

3 days. The test is known as fluorescent in-situ hybridization or FISH.

“It’s nice to be able to give that Mom a little

more info,” Abernathy says.

The downside of amniocentesis is that there is a small chance

it will cause a miscarriage.

Other tests

If you have a family history of genetic disorders such as

cystic fibrosis or sickle cell anemia, you may be offered additional tests to

determine whether you and your husband carry the genes for an inherited

disorder. Sometimes this screening can occur even before you become pregnant.

However, there is still no guarantee you will have a healthy

baby. Every couple faces a three to five percent risk that their child will

have a developmental delay or birth defect, Dickerson says.

“The one drawback is that of all the things we can test

for, we can’t detect everything,” she adds.

I was fortunate. My daughter was born May 12 and shows no

signs of Down syndrome. That’s reassuring.

-----Original

Message-----

From: IDSFparents

[mailto:IDSFparents ]

On Behalf Of Jan Huffman

Sent: Saturday, July 01, 2006

9:03 PM

IDSFparents

Subject: RE: [iDSFparents] Indy's

Child Magazine cover

While we, as a family, and while we, as IDSF create the strategy

for response and action, this is what I personally am going to do-

1.

Write a letter to the

editor as the mother of the

child featured on the cover and used to promote prenatal testing

2.

Remove every edition I see from the stands and throw them away (recycle bins of course)

Please feel free to participate in #1 or #2, as we certainly

don’t want this edition out there.

Jan

[Guest guest]

Do you know how to write a letter to the editor or the author? This is outrageous! How can they show those beautiful children on the cover and then write "I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That’s reassuring." What a slap in the face to those children and their parents.

ette

-------------- Original message from "Kathy Ratkiewicz" <Kathy_R@...>: --------------

I am forwarding this w/permission from Jan Huffman…this is the story behind the current Indy’s Child magazine issue:

I copied and pasted the article from the magazine below Jan’s letter.

kathyR

-----Original Message-----From: IDSFparents [mailto:IDSFparents ] On Behalf Of Jan HuffmanSent: Friday, June 30, 2006 9:28 PMIDSFparents Subject: [iDSFparents] Indy's Child Magazine cover

I thought I would post this before everyone sees the cover and accompanying "tag line" on the Indy's Child July edition. IDSF purchased an opportunity for a cover on Indy's Child magazine last year at 's Upside Down Ball. I don't have specifics as to how the month of July was chosen, but Busch, our Exec. Dir. sent out email notices about a photo shoot, and a shoot was scheduled for June 9, the same day as the DADS golf outing. Since 's article was previously published by Indy's Child about Ds and IDSF, they told that no article would accompany the cover shot. We were told it would be about "Summer Fun", and the picture was shot at the Holiday Inn waterpark.The July edition came out today. I am devastated.Indy's Child parenting magazine decided to use our kids on their cover, Nash, and Mackenzie, in a nice summer pool setting,

not to promote summer fun, but to use them for the "Maternity Issue" with a big tag line by their heads "Understanding the Results is Key for Prenatal Screening Tests" topped off with an article written by a woman that had prenatal testing but said "We're fortunate. Our child was born without Down syndrome".No "other side of the story" to assist with information from a parent, who has a child with Down syndrome, no information about the Indiana Down Syndrome Foundation contacts for parents that have positive results for Down syndrome if they chose prenatal testing………nothing. Nothing to help provide accurate information to the parents who receive a prenatal diagnosis.I feel our kids were used, for all the reasons we fight against. I feel all the efforts we put forth for inclusion and advocacy were just flushed down the toilet. I am devastated on a personal level, because I was led to believe t

his was a positive spin on our kids, and something I could cherish as something wonderful for our son and our local Ds community. I am trying to get past the emotions but can't- Jeff has been on the phone to gather input from , Steve Simpson, and those at our local ARC on how to respond, but it has to be in a positive way. Right now I feel anything but positive…………

Understanding the Results is Key for Prenatal Screening Testsby Amy CahillJuly 01, 2006It was two days before Thanksgiving when the call came from my obstetrician’s office.“Your test results came back positive for Down syndrome,” the nurse said. “I wanted to see if you’re going to be home tomorrow so we can try to get an appointment with a specialist.”I could not believe this was happening to me. I knew the triple screen blood test I’d taken had a five percent false positive rate, but when I decided to take the test, I

never thought it would affect me. When I was pregnant with my son, my test results showed that I had a one in 2676 chance of having a child with Down syndrome. I opted to take the test during my second pregnancy because I wanted similar reassurance. One in 42 was not reassuring. As I waited for the nurse to call back, I called my husband at work and filled him in. “That still means that out of 100 babies only two will have Down syndrome,” he said, trying to calm me down. I was not comforted. When the nurse called back, she told me that the first available appointment with the genetic counselor was Monday morning. The plan was for me to visit my doctor’s office first and do a regular ultrasound to be sure that the dates were right on my pregnancy. If they were, my husband and I would go to the specialist for an afternoon appointment. There we would be offered a more detailed ultrasound, genetic counseling and amniocentesis. If the dates were incorrect, my doctor would call the lab and have the test results recalculated based on my new due date.I pleaded with the nurse not to make me wait all of Thanksgiving weekend to learn if the dates were wrong and she agreed to squeeze me in for the regular ultrasound the next morning.After a sleepless night, I had decided that if the dates were right, I was having amniocentesis. I had to know for sure.Fortunately, the ultrasound showed the baby’s development was one week behind where it should have been based on my last menstrual period. That meant the test was done at 14 weeks, one week too soon. We redid the test the following Monday and the new results showed a one in 648 chance that the baby had Down syndrome. That was helpful, but still not what I had hoped for. I’ve asked myself again and again if I had known ahead of time what the outcome was going to be, would I still have taken the test? I would. Had my daughter had Down syndrome, I would have wanted to know ahead of time so I could prepare. However, I should have been better educated about the prenatal screening options available and what the test results really mean.There are two types of prenatal testing available—screening and diagnostic. Screening tests assess your risk of having a child with a birth defect such as Down syndrome, a neural tube defect or cystic fibrosis. Diagnostic tests determine whether the baby you are carrying actually has the defect. FIRST TRIMESTERFirst trimester screenA new test called the First Tri

mester Screen assesses a woman’s risk of having a child with Down syndrome or Trisomy 18. An extra chromosome, #21, causes Down syndrome, which results in mental and physical abnormalities, including mental retardation. Approximately one in 800 babies is born with Down syndrome. A woman’s risk of having a baby with Down syndrome increases as she ages. Trisomy 18 results when the baby has an extra chromosome, #18. Trisomy 18 causes serious mental retardation and physical deformities including heart defects. Only one out of 10 babies affected by Trisomy 18 will live past one year.The First Trimester Screen is done between the 11th and 13th week of pregnancy and includes drawing a blood sample from the mother and a special ultrasound. At the lab, technicians measure the levels of two proteins produced by the baby and the placenta, PAPP-A and human chorionic gondotropin (hCG). The ultraso

und, known as a nuchal translucency, measures a fluid-filled space in the back of the baby’s neck. Extra fluid can indicate problems.The screen detects roughly 83 percent of Down syndrome cases and 80 percent of Trisomy 18 cases. The advantage of the First Trimester Screen is that the mother often learns whether the baby is at an increased risk of having a birth defect before anyone else knows she is pregnant, says Dr. Pell Abernathy, a maternal fetal medicine specialist at the Indiana University School of Medicine. “Any pregnant woman could potentially benefit from this,” she says. Abernathy said the screening is popular on the East and West coasts, but has been slower to catch on in the Midwest. Dickerson, a certified genetic counselor at St. Maternal Fetal Medicine, says mos

t women opting for this screening are over 35, but the test is available to any pregnant woman. However, insurance companies may be reluctant to pay for the test for women who are not considered high risk. CVSChorionic Villi Sampling, CVS, is also performed during the first trimester between 10 and 12 weeks of pregnancy. During CVS, a doctor withdraws a small amount of tissue from the placenta with a catheter inserted through the patient’s cervix or abdomen. The tissue is then sent to a laboratory where the baby’s chromosomes are analyzed. While there is a 1 to 2 percent chance the mother’s tissue may contaminate the sample, CVS is generally considered a diagnostic test. The baby’s sex and any chromosomal abnormalities can be firmly established by the test. CVS carries a 1 to 3 percent risk of miscarriage.

B>SECOND TRIMESTERIntegrated ScreenThe Integrated Screen is also relatively new. It combines the results of the First Trimester Screen with a second blood test done between 15 and 22 weeks of pregnancy. The results are not available until after the second blood draw.The Integrated Screen offers a significant increase in accuracy and will also screen for neural tube defects like spina bifida.The neural tube develops into the baby’s brain and spinal cord. If the tube does not close completely, an opening remains along the baby’s spine or head. Neural tube defects affect one to two babies out of every 1000. The Integrated Screen detects approximately 92 percent of Down Syndrome cases, 90 percent of Trisomy 18 cases and 80 pe

rcent of open neural tube defects. Triple or Quad ScreenThe Triple Screen or Quad Screen, also known as maternal serum screening, is the test most women can expect to take in their doctor’s office. The screening test is done between the 15th and 22nd week of pregnancy and requires a sample of the mother’s blood. The optimal time for the test is between weeks 16 and 18. Once the blood sample is drawn, it is sent to a laboratory where technicians measure the level of three or four pregnancy hormones. The Triple Screen looks at alpha-fetoprotein, hCG and estriol. The Quad Screen also looks at the level of Inhibin A. The Triple Screen catches about 70 percent of Down syndrome cases, while the Quad Screen increases your chances of detection to about 81 percent. Both tests detect about 80 percent of Trisomy 18 ca

ses and open neural tube defects. The screening is considered positive for Down syndrome if it shows a one in 270 chance that the baby will have the defect. At age 35, a mother’s risk of having a child with Down syndrome is 1 in 270. Basically, a positive Triple or Quad Screen entitles a younger woman to the same right to have additional tests that a pregnant woman over 35 is given as part of her standard care.“It’s important, I think, that people realize it’s not a diagnosis,” Dickerson says.The screening is considered positive for a neural tube defect if the alpha-fetoprotein level is above 2.5 and a 1 in 100 chance is considered a positive for Trisomy 18. Approximately 5 percent of all positive Triple or Quad screens are false positives. “You want to try to pick up as many as you can,” Abernathy says. “You don’t want

to be in that 8 percent you miss that may have been falsely reassured.”Detailed ultrasound If a screening test comes back positive, the next step is usually a detailed ultrasound where highly trained technicians look for soft markers that indicate a problem with the baby. Detailed ultrasounds are routinely offered to women over 35 or couples with a family history of birth defects.During the detailed ultrasound, the technician looks for problems such as heart defects or abnormal growth which indicate the baby may have a birth defect. An ultrasound can detect at least 50 percent of babies who have Trisomy 18, Down syndrome and neural tube defects.“It’s a more detailed ultrasound than what you would have in your OB’s office,” Dickerson says.Amniocentesis The best way to diagnose a genetic defect like Down syndrome is amniocentesis, which is 99.8 percent accurate. The test is generally done between 15 and 22 weeks, although it can be done at any point during pregnancy. During amniocentesis, a doctor uses an ultrasound to visually guide a thin needle through the abdomen and into the uterus to withdraw a sample of amniotic fluid. “We try to be where the baby’s not, where the placenta’s not and where there’s a good pocket of fluid,” Abernathy says. She adds that amniocentesis hurts about as much as having your blood drawn.The fluid is sent to a lab where skin cells from the baby are grown in a Petri dish and examined to determine the baby’s chromosome composition. The test, which generally takes between one and three weeks, determines whether there are any chro

mosome defects and shows the baby’s sex.In a relatively new development, the laboratory can put special markers on certain chromosomes and have preliminary results within 1 to 3 days. The test is known as fluorescent in-situ hybridization or FISH. “It’s nice to be able to give that Mom a little more info,” Abernathy says.The downside of amniocentesis is that there is a small chance it will cause a miscarriage. Other testsIf you have a family history of genetic disorders such as cystic fibrosis or sickle cell anemia, you may be offered additional tests to determine whether you and your husband carry the genes for an inherited disorder. Sometimes this screening can occur even before you become pregnant.However, there is still no guarantee you w

ill have a healthy baby. Every couple faces a three to five percent risk that their child will have a developmental delay or birth defect, Dickerson says.“The one drawback is that of all the things we can test for, we can’t detect everything,” she adds.I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That’s reassuring.

-----Original Message-----From: IDSFparents [mailto:IDSFparents ] On Behalf Of Jan HuffmanSent: Saturday, July 01, 2006 9:03 PMIDSFparents Subject: RE: [iDSFparents] Indy's Child Magazine cover

While we, as a family, and while we, as IDSF create the strategy for response and action, this is what I personally am going to do-

1. Write a letter to the editor as the mother of the child featured on the cover and used to promote prenatal testing

2. Remove every edition I see from the stands and throw them away (recycle bins of course)

Please feel free to participate in #1 or #2, as we certainly don’t want this edition out there.

Jan

[Guest guest]

I am just stunned! How could they not realize or care how this might make the family feel? This is a family/parenting magazine???? Please post a follow up of the magazines' response if there is one, Kathy. Becky, mom to Allie (6)Kathy Ratkiewicz <Kathy_R@...> wrote: I am forwarding

this w/permission from Jan Huffman…this is the story behind the current Indy’s Child magazine issue: I copied and pasted the article from the magazine below Jan’s letter. kathyR -----Original Message-----From: IDSFparents

[mailto:IDSFparents ] On Behalf Of Jan HuffmanSent: Friday, June 30, 2006 9:28 PMIDSFparents Subject: [iDSFparents] Indy's Child Magazine cover I thought I would post this before everyone sees the cover and accompanying "tag line" on the Indy's Child July edition. IDSF purchased an opportunity for a cover on Indy's Child magazine last year at 's Upside Down Ball. I don't have

specifics as to how the month of July was chosen, but Busch, our Exec. Dir. sent out email notices about a photo shoot, and a shoot was scheduled for June 9, the same day as the DADS golf outing. Since 's article was previously published by Indy's Child about Ds and IDSF, they told that no article would accompany the cover shot. We were told it would be about "Summer Fun", and the picture was shot at the Holiday Inn waterpark.The July edition came out today. I am devastated.Indy's Child parenting magazine decided to use our kids on their cover, Nash, and Mackenzie, in a nice summer pool setting, not to promote summer fun, but to use them for the "Maternity Issue" with a big tag line by their heads "Understanding the Results is Key for Prenatal Screening Tests" topped off with an article written by a woman that had prenatal testing but said "We're fortunate. Our child was born

without Down syndrome".No "other side of the story" to assist with information from a parent, who has a child with Down syndrome, no information about the Indiana Down Syndrome Foundation contacts for parents that have positive results for Down syndrome if they chose prenatal testing………nothing. Nothing to help provide accurate information to the parents who receive a prenatal diagnosis.I feel our kids were used, for all the reasons we fight against. I feel all the efforts we put forth for inclusion and advocacy were just flushed down the toilet. I am devastated on a personal level, because I was led to believe this was a positive spin on our kids, and something I could cherish as something wonderful for our son and our local Ds community. I am trying to get past the emotions but can't- Jeff has been on the phone to gather input from , Steve Simpson, and those at our local ARC

on how to respond, but it has to be in a positive way. Right now I feel anything but positive………… Understanding the Results is Key for Prenatal Screening Testsby Amy CahillJuly 01, 2006It was two days before Thanksgiving when the call came from my obstetrician’s office.“Your test results came back positive for Down syndrome,” the nurse said. “I wanted to see if you’re going to be home tomorrow so we can try to get an appointment with a specialist.”I could not believe this was happening to me. I knew the triple screen blood test I’d taken had a five percent false positive rate, but when I decided to take the test, I never thought it would affect me. When I was pregnant with my son, my test results showed that I had a one in 2676 chance of having a child with Down syndrome. I opted to take the test during my second pregnancy because I wanted similar reassurance. One in 42 was not reassuring. As I waited for the nurse to call back, I called my husband

at work and filled him in. “That still means that out of 100 babies only two will have Down syndrome,” he said, trying to calm me down. I was not comforted. When the nurse called back, she told me that the first available appointment with the genetic counselor was Monday morning. The plan was for me to visit my doctor’s office first and do a regular ultrasound to be sure that the dates were right on my pregnancy. If they were, my husband and I would go to the specialist for an afternoon appointment. There we would be offered a more detailed ultrasound, genetic counseling and amniocentesis. If the dates were incorrect, my doctor would call the lab and have the test results recalculated based on my new due date.I pleaded with the nurse not to make me wait all of Thanksgiving weekend to learn if the dates were wrong and she agreed to squeeze me in for the regular ultrasound the

next morning.After a sleepless night, I had decided that if the dates were right, I was having amniocentesis. I had to know for sure.Fortunately, the ultrasound showed the baby’s development was one week behind where it should have been based on my last menstrual period. That meant the test was done at 14 weeks, one week too soon. We redid the test the following Monday and the new results showed a one in 648 chance that the baby had Down syndrome. That was helpful, but still not what I had hoped for. I’ve asked myself again and again if I had known ahead of time what the outcome was going to be, would I still have taken the test? I would. Had my daughter had Down syndrome, I would have wanted to know ahead of time so I could prepare. However, I should have been better educated about the prenatal screening options available and what the test

results really mean.There are two types of prenatal testing available—screening and diagnostic. Screening tests assess your risk of having a child with a birth defect such as Down syndrome, a neural tube defect or cystic fibrosis. Diagnostic tests determine whether the baby you are carrying actually has the defect. FIRST TRIMESTERFirst trimester screenA new test called the First Trimester Screen assesses a woman’s risk of having a child with Down syndrome or Trisomy 18. An extra chromosome, #21, causes Down syndrome, which results in mental and physical abnormalities, including mental retardation. Approximately one in 800 babies is born with Down syndrome. A woman’s risk of having a baby with Down syndrome increases as

she ages. Trisomy 18 results when the baby has an extra chromosome, #18. Trisomy 18 causes serious mental retardation and physical deformities including heart defects. Only one out of 10 babies affected by Trisomy 18 will live past one year.The First Trimester Screen is done between the 11th and 13th week of pregnancy and includes drawing a blood sample from the mother and a special ultrasound. At the lab, technicians measure the levels of two proteins produced by the baby and the placenta, PAPP-A and human chorionic gondotropin (hCG). The ultrasound, known as a nuchal translucency, measures a fluid-filled space in the back of the baby’s neck. Extra fluid can indicate problems.The screen detects roughly 83 percent of Down syndrome cases and 80 percent of Trisomy 18 cases. The advantage of the First Trimester Screen is that the mother often

learns whether the baby is at an increased risk of having a birth defect before anyone else knows she is pregnant, says Dr. Pell Abernathy, a maternal fetal medicine specialist at the Indiana University School of Medicine. “Any pregnant woman could potentially benefit from this,” she says. Abernathy said the screening is popular on the East and West coasts, but has been slower to catch on in the Midwest. Dickerson, a certified genetic counselor at St. Maternal Fetal Medicine, says most women opting for this screening are over 35, but the test is available to any pregnant woman. However, insurance companies may be reluctant to pay for the test for women who are not considered high risk. CVSChorionic Villi Sampling, CVS, is

also performed during the first trimester between 10 and 12 weeks of pregnancy. During CVS, a doctor withdraws a small amount of tissue from the placenta with a catheter inserted through the patient’s cervix or abdomen. The tissue is then sent to a laboratory where the baby’s chromosomes are analyzed. While there is a 1 to 2 percent chance the mother’s tissue may contaminate the sample, CVS is generally considered a diagnostic test. The baby’s sex and any chromosomal abnormalities can be firmly established by the test. CVS carries a 1 to 3 percent risk of miscarriage.SECOND TRIMESTERIntegrated ScreenThe Integrated Screen is also relatively new. It combines the results of the First Trimester Screen with a second blood test done between 15 and 22 weeks of

pregnancy. The results are not available until after the second blood draw.The Integrated Screen offers a significant increase in accuracy and will also screen for neural tube defects like spina bifida.The neural tube develops into the baby’s brain and spinal cord. If the tube does not close completely, an opening remains along the baby’s spine or head. Neural tube defects affect one to two babies out of every 1000. The Integrated Screen detects approximately 92 percent of Down Syndrome cases, 90 percent of Trisomy 18 cases and 80 percent of open neural tube defects. Triple or Quad ScreenThe Triple Screen or Quad Screen, also known as maternal serum screening, is the test most women can expect to take in their doctor’s office. The screening test is done

between the 15th and 22nd week of pregnancy and requires a sample of the mother’s blood. The optimal time for the test is between weeks 16 and 18. Once the blood sample is drawn, it is sent to a laboratory where technicians measure the level of three or four pregnancy hormones. The Triple Screen looks at alpha-fetoprotein, hCG and estriol. The Quad Screen also looks at the level of Inhibin A. The Triple Screen catches about 70 percent of Down syndrome cases, while the Quad Screen increases your chances of detection to about 81 percent. Both tests detect about 80 percent of Trisomy 18 cases and open neural tube defects. The screening is considered positive for Down syndrome if it shows a one in 270 chance that the baby will have the defect. At age 35, a mother’s risk of having a child with Down syndrome is 1 in 270. Basically, a positive Triple or Quad Screen entitles a

younger woman to the same right to have additional tests that a pregnant woman over 35 is given as part of her standard care.“It’s important, I think, that people realize it’s not a diagnosis,” Dickerson says.The screening is considered positive for a neural tube defect if the alpha-fetoprotein level is above 2.5 and a 1 in 100 chance is considered a positive for Trisomy 18. Approximately 5 percent of all positive Triple or Quad screens are false positives. “You want to try to pick up as many as you can,” Abernathy says. “You don’t want to be in that 8 percent you miss that may have been falsely reassured.”Detailed ultrasound If a screening test comes back positive, the next step is usually a detailed ultrasound where highly trained

technicians look for soft markers that indicate a problem with the baby. Detailed ultrasounds are routinely offered to women over 35 or couples with a family history of birth defects.During the detailed ultrasound, the technician looks for problems such as heart defects or abnormal growth which indicate the baby may have a birth defect. An ultrasound can detect at least 50 percent of babies who have Trisomy 18, Down syndrome and neural tube defects.“It’s a more detailed ultrasound than what you would have in your OB’s office,” Dickerson says.Amniocentesis The best way to diagnose a genetic defect like Down syndrome is amniocentesis, which is 99.8 percent accurate. The test is generally done between 15 and 22 weeks, although it can be done at any point during pregnancy. During

amniocentesis, a doctor uses an ultrasound to visually guide a thin needle through the abdomen and into the uterus to withdraw a sample of amniotic fluid. “We try to be where the baby’s not, where the placenta’s not and where there’s a good pocket of fluid,” Abernathy says. She adds that amniocentesis hurts about as much as having your blood drawn.The fluid is sent to a lab where skin cells from the baby are grown in a Petri dish and examined to determine the baby’s chromosome composition. The test, which generally takes between one and three weeks, determines whether there are any chromosome defects and shows the baby’s sex.In a relatively new development, the laboratory can put special markers on certain chromosomes and have preliminary results within 1 to 3 days. The test is known as fluorescent in-situ hybridization or FISH.

“It’s nice to be able to give that Mom a little more info,” Abernathy says.The downside of amniocentesis is that there is a small chance it will cause a miscarriage. Other testsIf you have a family history of genetic disorders such as cystic fibrosis or sickle cell anemia, you may be offered additional tests to determine whether you and your husband carry the genes for an inherited disorder. Sometimes this screening can occur even before you become pregnant.However, there is still no guarantee you will have a healthy baby. Every couple faces a three to five percent risk that their child will have a developmental delay or birth defect, Dickerson says.“The one drawback is that of all the things we can test for, we can’t detect

everything,” she adds.I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That’s reassuring. -----Original Message-----From: IDSFparents [mailto:IDSFparents ] On Behalf Of Jan HuffmanSent: Saturday, July 01, 2006 9:03 PMIDSFparents Subject: RE: [iDSFparents] Indy's Child Magazine cover While we, as a family, and while we, as IDSF create the strategy for response and action, this is what I personally am going to do- 1. Write a letter to

the editor as the mother of the child featured on the cover and used to promote prenatal testing 2. Remove every edition I see from the stands and throw them away (recycle bins of course) Please feel free to participate in #1 or #2, as we certainly don’t want this edition out there. Jan __________________________________________________

[Guest guest]

From: IDSFparents [mailto:IDSFparents ] On Behalf Of Simpson

Sent: Monday, July 03, 2006 11:00

AM

IDSFparents

Cc: IDSFparents

Subject: Re: [iDSFparents] Indy's

Child Magazine cover

To anyone who sends a letter to the Indy's Child publication.

I would appreciate it if you send us a copy of your

correspondence. We want to print them out and have them ready when we

meet the management of the publication.

Thank you

Steve Simpson

IDSF President

Here is the address:

editor@...

I found a street address for the author, but I couldn’t find an

email address. But I am sure if you sent an email to her c/o the Indy’s

Child email address, they could make sure she got it.

We are also writing to companies who advertise in the magazine:

Riley Children’s Hopsital:

Here is some Clarian/Riley contact information:

Jon Mills, Manager, Public Affairs

As Clarian's public affairs manager, Jon oversees public and media

relations for Clarian's hospitals, physicians and statewide

partners.

Contact: (317) 962-4526

E-mail: jmills3clarian (DOT) org

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of pbeurrier@...

Sent: Monday, July 03, 2006 8:11

PM

Down Syndrome Treatment

Subject: Re:

: [iDSFparents] Indy's Child Magazine cover

Do you

know how to write a letter to the editor or the author? This is outrageous! How

can they show those beautiful children on the cover and then write " I was fortunate. My

daughter was born May 12 and shows no signs of Down syndrome. That’s

reassuring. " What a slap in the face to those children and their parents.

ette

--------- RE: [iDSFparents] Indy's

Child Magazine cover

While we, as a family, and while we, as IDSF create

the strategy for response and action, this is what I personally am going to do-

1.

Write a letter to the

editor as the mother of the

child featured on the cover and used to promote prenatal testing

2.

Remove every edition I see from the stands and throw them away (recycle bins of course)

Please feel free to participate in #1 or #2, as we

certainly don’t want this edition out there.

Jan