Early test for Down Syndrome first trimester

[Ariadne]

I don't know any doctors who still tell women that about heart rate.

You are misinformed if you think that ultrasound results won't change treatment for the mother or the baby. They can and do. The things in green can not necessarily be confirmed by other methods. Those other methods are limited in what they can tell us.

Knowing there is something wrong with the placenta can influence our care of a laboring women immensely. Placenta previa is the most obvious example. If you don't know you have it and try to give birth vaginally, there is a good chance you'll bleed to death (this is also one of the possible reasons for bleeding in pregnancy). Aside from the physical benefits, the emotional benefits are immense. Sure parents survive even when they are surprised by a congenital defect the day their baby is born, but they don't do as well as parents who are prepared ahead of time. And yes, a lot of parents will decide whether or not to terminate pregnancies based on ultrasound results. There are conditions for which I would choose that. You may not see that as a benefit, but it is for lots of people. I wouldn't want to carry an anecephalic baby to term just to watch it die. Being spared that because of an ultrasound would be a positive for me.

It also isn't so simple at birth for the baby. Certain defects need treatment immediately or they will result in serious injury or death. Give birth to a baby with hypoplastic left heart or tetralogy of Fallot or a congenital diaphragmatic hearnia in a small hospital without specialists and your chance of a good outcome decrease significantly. Those babies usually need immediate treatment. Part of the treatment we routinely do at delivery can be harmful for cardiac patients. In duct dependent conditions, the baby NEEDS a duct called the ductus arteriosis to stay open in order to survive. If we don't know that and give the baby oxygen because it seems stressed we can actually cause it to close.

I do know doctors that tell women about the relationship between heart rate and fetal gender - that's where I learned it ... from two different doctors that looked after my pregnancies. It fell into the realm of an old wives tale after ultrasound results compared heart rate and gender, but there is no reason to assume that the ultrasound doesn't stress the fetus and cause the heart rate to be different than a restful state.

Regardless of the specific abnormalities in newborns, it still doesn't justify subjecting thousands of unborn babies to unnecessary, medically intrusive, procedures. Deep ultrasound, replacing the amnio, is even more intrusive and even more unnecessary for 98% of pregnancies. Keep these procedures as optional but don't treat pregnant women as having an illness ... because they are not sick people, they are pregnant - a perfectly healthy and normal part of a woman's life.

 

[tracy]

I do know doctors that tell women about the relationship between heart rate and fetal gender - that's where I learned it ... from two different doctors that looked after my pregnancies. It fell into the realm of an old wives tale after ultrasound results compared heart rate and gender, but there is no reason to assume that the ultrasound doesn't stress the fetus and cause the heart rate to be different than a restful state.

Regardless of the specific abnormalities in newborns, it still doesn't justify subjecting thousands of unborn babies to unnecessary, medically intrusive, procedures. Deep ultrasound, replacing the amnio, is even more intrusive and even more unnecessary for 98% of pregnancies. Keep these procedures as optional but don't treat pregnant women as having an illness ... because they are not sick people, they are pregnant - a perfectly healthy and normal part of a woman's life.

Considering you posted were pregnant in the early 80s, I think it's fair to say you were probably given some information we don't consider reliable anymore. That's why I said I don't know any doctors who still tell women that idea about heart rate and gender. There is nothing to support it, not even studies using stethoscopes.

As for the 2nd part... You consider an ultrasound unnecessary and medically intrusive. I don't, neither do most OBs. Putting a little gel on my abdomen and going over it with a piece of medical equipment is not intrusive at all. Finding out about congenital anomalies or health conditions that we wouldn't otherwise find out about even if it's in a minority of cases is worthwhile to many of us. They are optional, so no one is being forced into it, but I don't see any reason to ignore the real benefits. We do a lot of screening and treatment in medicine that will catch the minority because we consider it worthwhile. Ever hear of PKU tests? We take blood from almost every baby born and send it for testing. It picks up several metabolic issues that would otherwise cause a newborn to become extremely ill or even die. The amount of babies that test positive is extremely small, but we consider even a small number of lives saved as being worth the inconvinience to the rest. I've been working for years with babies and moms and have only seen a handful of kids test positive on the PKU test. I've seen hundreds with anomalies and disorders caught by ultrasounds before birth. Mothers and babies are alive today thanks to that ultrasound that wouldn't be otherwise. That's a really concrete benefit that I'd weigh against the fact that there are no proven risks.

 

[Ariadne]

Considering you posted were pregnant in the early 80s, I think it's fair to say you were probably given some information we don't consider reliable anymore. That's why I said I don't know any doctors who still tell women that idea about heart rate and gender. There is nothing to support it, not even studies using stethoscopes.

As for the 2nd part... You consider an ultrasound unnecessary and medically intrusive. I don't, neither do most OBs. Putting a little gel on my abdomen and going over it with a piece of medical equipment is not intrusive at all. Finding out about congenital anomalies or health conditions that we wouldn't otherwise find out about even if it's in a minority of cases is worthwhile to many of us. They are optional, so no one is being forced into it, but I don't see any reason to ignore the real benefits. We do a lot of screening and treatment in medicine that will catch the minority because we consider it worthwhile. Ever hear of PKU tests? We take blood from almost every baby born and send it for testing. It picks up several metabolic issues that would otherwise cause a newborn to become extremely ill or even die. The amount of babies that test positive is extremely small, but we consider even a small number of lives saved as being worth the inconvinience to the rest. I've been working for years with babies and moms and have only seen a handful of kids test positive on the PKU test. I've seen hundreds with anomalies and disorders caught by ultrasounds before birth. Mothers and babies are alive today thanks to that ultrasound that wouldn't be otherwise. That's a really concrete benefit that I'd weigh against the fact that there are no proven risks.

There are several different philosophies about childbirth. I gravitate towards the philosophy that birthing women are not ill, that their babies are not sick and that medicine has a place but it should not be treating pregant women as sick people that need all sorts of medical intervention throughout the pregnancy. Even during birth women are strapped up to all sorts of machines. For example, the fetal heart monitor is a cool tool, but it requires that a woman be flat on her back so the machine can do it's work for 20 minutes while the nurses are busy doing something else. Placing a labouring woman flat on her back during active labour is completely contrary to what is beneficial to the mother and child. I could go on and on about all the machines and techiques that are used to assist medical personnel identify the 2-3% of problems, but how often do these screening techniques result in adverse circumstances for mother and child that would not occur without the screening?

Think back about 100 years when women were required to birth on their backs (not that this has really changed) and puerperal fever was the issue. Infant and maternal mortality rates were 12% because doctors were introducing desease to women. How long did it take for anyone to realize that the babies were dying because of the doctors? It was more than 100 years. Think back about 20 years and again, doctors required women to birth on their backs while lying on an operating room table. Women birthed on their backs because it was convenient for doctors, but it was never best for birthing. Even today, birthing beds are the big thing but women are better off birthing in a squating position. How many years will go by before doctors give up that visually advantageous posture of the woman on a bed/chair and let them give birth in ways that are best for birthing ... like maybe making use of gravity.

Medicine initially caused women to be sick while pregnant (puerperal fever) and 200 years later they are still treated like they, or their baby, are sick. Sure, some babies have down's syndrome, but the majority don't and testing all babies for down's syndrome is not going to change the outcome. The only result is that parents that don't want the inconvenience of a congenitally defective child can terminate the pregnancy. I'm not sure that I want to subject all children to testing so that a few parents will not be inconvenienced by a child with down's syndrome.

 

[tracy]

There are several different philosophies about childbirth. I gravitate towards the philosophy that birthing women are not ill, that their babies are not sick and that medicine has a place but it should not be treating pregant women as sick people that need all sorts of medical intervention throughout the pregnancy. Even during birth women are strapped up to all sorts of machines. For example, the fetal heart monitor is a cool tool, but it requires that a woman be flat on her back so the machine can do it's work for 20 minutes while the nurses are busy doing something else. Placing a labouring woman flat on her back during active labour is completely contrary to what is beneficial to the mother and child. I could go on and on about all the machines and techiques that are used to assist medical personnel identify the 2-3% of problems, but how often do these screening techniques result in adverse circumstances for mother and child that would not occur without the screening?

Think back about 100 years when women were required to birth on their backs (not that this has really changed) and puerperal fever was the issue. Infant and maternal mortality rates were 12% because doctors were introducing desease to women. How long did it take for anyone to realize that the babies were dying because of the doctors? It was more than 100 years. Think back about 20 years and again, doctors required women to birth on their backs while lying on an operating room table. Women birthed on their backs because it was convenient for doctors, but it was never best for birthing. Even today, birthing beds are the big thing but women are better off birthing in a squating position. How many years will go by before doctors give up that visually advantageous posture of the woman on a bed/chair and let them give birth in ways that are best for birthing ... like maybe making use of gravity.

Medicine initially caused women to be sick while pregnant (puerperal fever) and 200 years later they are still treated like they, or their baby, are sick. Sure, some babies have down's syndrome, but the majority don't and testing all babies for down's syndrome is not going to change the outcome. The only result is that parents that don't want the inconvenience of a congenitally defective child can terminate the pregnancy. I'm not sure that I want to subject all children to testing so that a few parents will not be inconvenienced by a child with down's syndrome.

You may not want parents to have the choice to abort a child with a congenital anomaly, but I do. I believe in as much choice in childbearing as possible. I also want them to have the chance to give their baby the best possible outcome if they choose to carry to term by birthing in a hospital that is able to treat their child. I do see babies harmed by being born with congenital defects we didn't know about before birth that could have had better outcomes if they had been detected. It isn't just congenital anomalies either, it's things like placenta previa and intrauterine growth restriction and oligohydramnios...

I actually subscribe to a similar philosophy about child birth, I'm just also aware of the non-healthy births as well. I think you're either being told things that are not necessarily true about births today or perhaps your birth experiences at the time were not particularly empowering. They were still doing routine shaves, enemas and episiotomies in the 80s. A lot of things have changed. Women are not being treated like cattle anymore. We don't strap them into stirrups and force them to take meds or have IVs or continuous monitoring. There is a balance between the two extremes (no interventions and excessive interventions). I'm no fan of unecessary interventions, but I know that one of the reasons our mortality rates have decreased for childbearing IS because of some of the interventions we do which are necessary.

Fetal heart monitoring in labor does not require a woman to lie flat on her back at all. In fact, nurses are taught to NEVER have a laboring woman flat on her back (the uterus can press on the superior vena cava which decreases blood flow to baby). Continuous fetal monitoring can be done with the mother in several different positions and is not necessary in low risk routine deliveries in most places because it has no benefits for those women. Instead nurses can use a doppler to sample the heart rate about every 15 minutes or so. Mom can be in any position, on a bed, a birthing ball, in the bath, etc. and we can still do that. Most hospital birthing beds can be broken down to turn into a sort of birthing stool just like you mentioned. We also have squatting bars which attach to the beds and allow women support in a squatting position. I've seen babies born to women squatting, sitting, lying, on their hands and knees, etc. and I've only ever attended births in hospitals and birthing centers. The only time I see women in stirrups is when they've chosen an epidural, and even then it's not the norm. It's usually dad and a nurse each holding up a leg.

 

[Ariadne]

You may not want parents to have the choice to abort a child with a congenital anomaly, but I do. I believe in as much choice in childbearing as possible. I also want them to have the chance to give their baby the best possible outcome if they choose to carry to term by birthing in a hospital that is able to treat their child. I do see babies harmed by being born with congenital defects we didn't know about before birth that could have had better outcomes if they had been detected. It isn't just congenital anomalies either, it's things like placenta previa and intrauterine growth restriction and oligohydramnios...

I actually subscribe to a similar philosophy about child birth, I'm just also aware of the non-healthy births as well. I think you're either being told things that are not necessarily true about births today or perhaps your birth experiences at the time were not particularly empowering. They were still doing routine shaves, enemas and episiotomies in the 80s. A lot of things have changed. Women are not being treated like cattle anymore. We don't strap them into stirrups and force them to take meds or have IVs or continuous monitoring. There is a balance between the two extremes (no interventions and excessive interventions). I'm no fan of unecessary interventions, but I know that one of the reasons our mortality rates have decreased for childbearing IS because of some of the interventions we do which are necessary.

Fetal heart monitoring in labor does not require a woman to lie flat on her back at all. In fact, nurses are taught to NEVER have a laboring woman flat on her back (the uterus can press on the superior vena cava which decreases blood flow to baby). Continuous fetal monitoring can be done with the mother in several different positions and is not necessary in low risk routine deliveries in most places because it has no benefits for those women. Instead nurses can use a doppler to sample the heart rate about every 15 minutes or so. Mom can be in any position, on a bed, a birthing ball, in the bath, etc. and we can still do that. Most hospital birthing beds can be broken down to turn into a sort of birthing stool just like you mentioned. We also have squatting bars which attach to the beds and allow women support in a squatting position. I've seen babies born to women squatting, sitting, lying, on their hands and knees, etc. and I've only ever attended births in hospitals and birthing centers. The only time I see women in stirrups is when they've chosen an epidural, and even then it's not the norm. It's usually dad and a nurse each holding up a leg.

Working in a hospital, you've certainly seen all the problems. Having given birth both in the early 80s and the late 90s, I've certainly seen the drawbacks to medical intervention. I know how birthing has changed in the last 30 years, but it is not yet outside of the realm of treating women as needing to be hospitalized or treated as sick. It is not by coincidence that I am aware of puerperal fever, it is because I have completed extensive research on the management of childbirth throughout history - right back to the birthing stones and poles. I suppose that, coming from such different approaches to childbirth, we will continue to have differing views regarding the degree of medical intervention required in childbirth and maternal care. I don't care if people have abortions, but I do care if all women are subjected to testing for down's syndrome so a few can avoid the responsibility of caring for a mentally challenged child. I continue to believe that requiring all women, regardless of age, to have the test is an unnecessary burden on the health care system and it could have as yet unseen detrimental effects on the children subjected to higher intensity ultrasound scans. Ultrasounds cause heat and as soon as that temperature hits 41 degrees, there will be problems. Maybe that isn't a concern with a child with down's syndrome, but it is a concern with a healthy child. Technicians make mistakes and without a doubt, if all pregnant women have the test, mistakes will be made.

 

[tracy]

The point is women aren't "subjected" to anything in childbearing anymore. They have the right and the responsibility to make their own decisions. There is not one single test or intervention that doctors can require women to have. Women have complete control over childbearing. I've seen plenty of women refuse to follow medical advice. That's their right.

In 2000 about 1/3 of pregnant women in this country didn't have ultrasounds, so it isn't like we're strapping them down and forcing it on them.

http://www.askquestions.org/articles/ultrasound/
"In 2000, approximately 2.7 million women in the United States received prenatal sonograms—some 67 percent of pregnant women. (2)"

 

[Ariadne]

The point is women aren't "subjected" to anything in childbearing anymore. They have the right and the responsibility to make their own decisions. There is not one single test or intervention that doctors can require women to have. Women have complete control over childbearing. I've seen plenty of women refuse to follow medical advice. That's their right.

In 2000 about 1/3 of pregnant women in this country didn't have ultrasounds, so it isn't like we're strapping them down and forcing it on them.

http://www.askquestions.org/articles/ultrasound/
"In 2000, approximately 2.7 million women in the United States received prenatal sonograms—some 67 percent of pregnant women. (2)"

I'm afraid I can't agree with statement that women aren't subjected to all sorts of things once they go to a hospital. For example, maternity ward employees are so familiar with the screamers ... those women that make a big, noisy, emotional, "pay attention to me" production out of childbirth ... that if a woman controls herself, she will be subjected to all sorts of tests to prove to the staff that she is indeed in labour and experiencing frequent, regular contractions. If she doesn't submit to the tests, the staff will offer her a couple of tylenol and go back to their card game. After they do their tests to confirm what the birthing woman has already told them, they throw her in a wheelchair (because they suddenly believe the woman is incapable of walking) and wheel her into whatever room they can find for delivery. If that isn't subjecting women to nonsense, I don't know what is. Every single woman either has or knows of a hospital birth horror story.

That's a really scary statistic ... that 2.7 million United States women had a prenatal ultrasound in 2000. It sounds to me like a highly recommended, routine procedure for pregnant women. I wouldn't be surprised if the women that didn't have the scan simply didn't have healthy insurance.

 

[tracy]

I'm afraid I can't agree with statement that women aren't subjected to all sorts of things once they go to a hospital. For example, maternity ward employees are so familiar with the screamers ... those women that make a big, noisy, emotional, "pay attention to me" production out of childbirth ... that if a woman controls herself, she will be subjected to all sorts of tests to prove to the staff that she is indeed in labour and experiencing frequent, regular contractions. If she doesn't submit to the tests, the staff will offer her a couple of tylenol and go back to their card game. After they do their tests to confirm what the birthing woman has already told them, they throw her in a wheelchair (because they suddenly believe the woman is incapable of walking) and wheel her into whatever room they can find for delivery. If that isn't subjecting women to nonsense, I don't know what is. Every single woman either has or knows of a hospital birth horror story.

Everyone knows a hospital birth horror story... maybe. I also find a lot of women's birth stories are somewhat changed with time and women love to terrify other women with tales of childbirth. That doesn't make them the norm. I have worked in women's and infants health for the last 5+ years and can only name one hospital that I think treats women poorly. I have never seen a nurse behave the way you described. Believe it or not, most of us went into this particular field because we are passionate about women's and infant's health, not because we thought it would be really easy or because we think women are dumb (you know, we get to play cards, yell push once or twice a day, ruin a family's birth experience and collect a nice paycheck while we wait to meet a cute doctor to marry...). We don't give tylenol to pregnant women and we don't play cards on the unit. The only "test" to see if a woman is having regular contractions is to palpate her abdomen with a nurse's hand. That isn't exactly invasive. Birthing rooms are generally the nicest rooms in the hospital and they aren't separate from labor rooms in most hospitals anymore. I'm actually not used to screamers either. They're not the norm. Women who really can't deal with pain will usually request an epidural.

 

[Will & Jake's Mom]

From Someone Who's Been There

Hi everyone,

I came across this webpage in a random search I was doing and couldn't help but post. I'm 35 years old and live in California. I'm the mother of twin boys, 16 months old, one with Down syndrome. The early trimester test was not available when I was pregnant, but I had the AFP blood test in about the middle of my 2nd trimester. The result was a false negative - and with twins, you usually get a false positive. I cannot describe to you the shock and pain my husband and I felt when we got the DS diagnosis.

That said, in hindsight, I'm glad I didn't have a choice. Never having kids before, I may have opted for abortion and an easy way out. But what I've realized is that it would have been a selfish choice. Everyone says your life will be ruined by having a DS child and that the child will only suffer. Well, I have a great life, and my DS son is the happiest. most content baby ever.

I sort of don't buy the argument that early screening can be used for prenatal treatment, because, for example, if your child has a heart defect, the doctors should be able to detect that regardless of whether the baby has DS or not. My babies were born 10 weeks premature, and they both needed lots of medical attention. I don't know that my DS son needed that much more than my non-DS son. In fact, my DS son seemed to even need less help with breathing and other things than my non-DS son.

While I wouldn't trade my precious DS angel for anything, I admit that if I could take it away and make my life easier (less worry), I would. On the other hand, my son has inspired me to do things I never would have before. When something so devastating happens, you feel like nothing can hurt you anymore - you no longer need that safety net under your tightrope. I have become fearless, and a strong advocate for my son. I've formed a committee of parents and professionals to establish a specialized Down syndrome center in San Diego. And I've hopefully enlightened a few of my fellow neighbors to the north.

Thanks for reading.

 

[Ariadne]

Hi everyone,

I came across this webpage in a random search I was doing and couldn't help but post. I'm 35 years old and live in California. I'm the mother of twin boys, 16 months old, one with Down syndrome. The early trimester test was not available when I was pregnant, but I had the AFP blood test in about the middle of my 2nd trimester. The result was a false negative - and with twins, you usually get a false positive. I cannot describe to you the shock and pain my husband and I felt when we got the DS diagnosis.

That said, in hindsight, I'm glad I didn't have a choice. Never having kids before, I may have opted for abortion and an easy way out. But what I've realized is that it would have been a selfish choice. Everyone says your life will be ruined by having a DS child and that the child will only suffer. Well, I have a great life, and my DS son is the happiest. most content baby ever.

I sort of don't buy the argument that early screening can be used for prenatal treatment, because, for example, if your child has a heart defect, the doctors should be able to detect that regardless of whether the baby has DS or not. My babies were born 10 weeks premature, and they both needed lots of medical attention. I don't know that my DS son needed that much more than my non-DS son. In fact, my DS son seemed to even need less help with breathing and other things than my non-DS son.

While I wouldn't trade my precious DS angel for anything, I admit that if I could take it away and make my life easier (less worry), I would. On the other hand, my son has inspired me to do things I never would have before. When something so devastating happens, you feel like nothing can hurt you anymore - you no longer need that safety net under your tightrope. I have become fearless, and a strong advocate for my son. I've formed a committee of parents and professionals to establish a specialized Down syndrome center in San Diego. And I've hopefully enlightened a few of my fellow neighbors to the north.

Thanks for reading.

Thank you so much for posting this. I can imagine that if you had used the nuchal translucency ultrasound procedure, it would have been possible to identify both a healthy child and one with Down's Syndrome. That would have presented a difficult decision because terminating one could result in accidentally terminating both. Having both would mean that the childhood of the healthy twin would be altered. There would always be some guilt not only for terminating a pregnancy, but because you always be reminded of the missing one by the existing one.

Just a guess, but I think you made the correct decision. Just weighing a few of the alternatives, I think I would have made the choice you did. Having a child with a congenital abnormality; even a minor condition, is very time consuming and, at times, emotionally draining. However, the children become emotionally mature more quickly, they are more compassionate and, unfortunate as the reason is, parents find a second wind in terms of advocating and finding value in new places. There have been some outstanding art exhibits by people (children) with Down's Syndrome. Encouraging the arts is always an outlet for everyone. Congratulations on founding an organization for people to share stories, brainstorm and strategize. I have a friend with DS child his wife may be interested in a website like that ... I'm guessing you have a website in the works?

 

[Ariadne]

Everyone knows a hospital birth horror story... maybe. I also find a lot of women's birth stories are somewhat changed with time and women love to terrify other women with tales of childbirth. That doesn't make them the norm. I have worked in women's and infants health for the last 5+ years and can only name one hospital that I think treats women poorly. I have never seen a nurse behave the way you described. Believe it or not, most of us went into this particular field because we are passionate about women's and infant's health, not because we thought it would be really easy or because we think women are dumb (you know, we get to play cards, yell push once or twice a day, ruin a family's birth experience and collect a nice paycheck while we wait to meet a cute doctor to marry...). We don't give tylenol to pregnant women and we don't play cards on the unit. The only "test" to see if a woman is having regular contractions is to palpate her abdomen with a nurse's hand. That isn't exactly invasive. Birthing rooms are generally the nicest rooms in the hospital and they aren't separate from labor rooms in most hospitals anymore. I'm actually not used to screamers either. They're not the norm. Women who really can't deal with pain will usually request an epidural.

Do you think I'm making this up? I'm not. In some hospitals in major cities in Canada, maternity ward nurses do play cards and offer tylenol to labouring women. I have never met a woman that didn't have a birthing horror story, personal or close friend. They don't share these stories to scare people, they share them because they all have one. A common one is women that think they have 36 hour labours ... that's a nightmare. They go to the hospital full term and teetering on distress but are turned away because it's not considered at dilation stage. They could be offered oxytocin to get things moving, avoid the exhaustion and deliver naturally. Instead, they go home, too scared to sleep, exhaust themselves and ultimately end up on a c-section table.

Women with back labour are routinely offered an epidural but they're better off delivering on hands and knees. Women with back labour are usually the ones in a lot of pain. Most women don't request an epidural unless it is recommended, or offered, and a doctor is standing by to deliver. An epidural paralyzes a patient from the waist down and can terminate contractions; a rather significant medical intervention.

 

[Curiosity]

Dear Will & Jake's Mom

First welcome - and thank you for sharing your story with us - especially pertinent to the topic at hand.

Finally I read one answer to my question - whether abortion is an option or not. In your case - you allow us to see that in your "information" was delayed and pretty much determined the outcome as well.

I have a feeling you would have opted to keep your precious cargo intact even if you had been informed of a possible Down baby -

I am not against abortion and my intention here was not as such - only to find out if more and more testing is available for disorders in utero, would there be an increase of early abortions?

Out of pain and confusion - comes a light to shine on our path. I believe those who have been given tremendous challenge and adversity are chosen because they can take it and lead significantly more enriched lives for it.

 

[Will & Jake's Mom]

Ariadne - I unfortunately cannot take credit for making the "right" decision, as I really didn't have any decision to make I cannot imagine being faced with such decision - especially in the 2nd trimester, and I just thank goodness things worked out the way they did for me and my boys. I admit, I assumed the absolute worst when I heard the words "Down syndrome" one week after the boys were born. I didn't think Will (DS) could amount to anything. I just thought he would be "retarded." Awful thoughts crossed my mind - I didn't even think I could raise this child. But Will is more similar to his brother than he is different. And my non-DS child, Jake, is so difficult at times my husband and I joke that we feared DS....until we had our non-DS child! ha ha!

We do have a website in the works but its not up yet. I would recommend www.nads.org. They have an excellent discussion forum for DS issues. It's my favorite DS forum.

Curiosity - I still go back and forth on the issue of testing. I heard rumors, for example, that Julia Roberts was having her eggs genetically tested and that angered me. It sends the message that non-perfect kids aren't desirable. But, on the other hand, if I wanted to have more kids, I would have my eggs tested if I could afford it! Also, I think there absolutely has been an increase in abortions since these tests began. I was shocked to learn that over 90% of women who find out they are having a DS baby choose to abort. That's the reality of it.

If anyone is interested, there's a book called "Expecting Adam" that's very good. It's a true story about a woman and her husband who are studying at Harvard and find out they are pregnant with a DS baby. Everyone thinks they should abort. Although it's not in the book, the woman, Martha Beck, basically went on to develop a vitamin/nutrient protocol to help DS people and is a very successful writer who works for Oprah.

 

[Will & Jake's Mom]

Ariadne - I unfortunately cannot take credit for making the "right" decision, as I really didn't have any decision to make I cannot imagine being faced with such decision - especially in the 2nd trimester, and I just thank goodness things worked out the way they did for me and my boys. I admit, I assumed the absolute worst when I heard the words "Down syndrome" one week after the boys were born. I didn't think Will (DS) could amount to anything. I just thought he would be "retarded." Awful thoughts crossed my mind - I didn't even think I could raise this child. But Will is more similar to his brother than he is different. And my non-DS child, Jake, is so difficult at times my husband and I joke that we feared DS....until we had our non-DS child! ha ha!

We do have a website in the works but its not up yet. I would recommend www.nads.org. They have an excellent discussion forum for DS issues. It's my favorite DS forum.

Curiosity - I still go back and forth on the issue of testing. I heard rumors, for example, that Julia Roberts was having her eggs genetically tested and that angered me. It sends the message that non-perfect kids aren't desirable. And now that I have a DS child, I don't want him growing up in a society that advocates aborting babies like him. But, on the other hand, if I wanted to have more kids, I would have my eggs tested if I could afford it! Also, I think there absolutely has been an increase in abortions since these tests began. I was shocked to learn that over 90% of women who find out they are having a DS baby choose to abort. That's the reality of it.

If anyone is interested, there's a book called "Expecting Adam" that's very good. It's a true story about a woman and her husband who are studying at Harvard and find out they are pregnant with a DS baby. Everyone thinks they should abort. Although it's not in the book, the woman, Martha Beck, basically went on to develop a vitamin/nutrient protocol to help DS people and is a very successful writer who works for Oprah.

 

[tracy]

Do you think I'm making this up? I'm not. In some hospitals in major cities in Canada, maternity ward nurses do play cards and offer tylenol to labouring women. I have never met a woman that didn't have a birthing horror story, personal or close friend. They don't share these stories to scare people, they share them because they all have one. A common one is women that think they have 36 hour labours ... that's a nightmare. They go to the hospital full term and teetering on distress but are turned away because it's not considered at dilation stage. They could be offered oxytocin to get things moving, avoid the exhaustion and deliver naturally. Instead, they go home, too scared to sleep, exhaust themselves and ultimately end up on a c-section table.

Women with back labour are routinely offered an epidural but they're better off delivering on hands and knees. Women with back labour are usually the ones in a lot of pain. Most women don't request an epidural unless it is recommended, or offered, and a doctor is standing by to deliver. An epidural paralyzes a patient from the waist down and can terminate contractions; a rather significant medical intervention.

You obviously don't understand the rationale behind some hospital policies. This type of misunderstanding is often the root cause of "the hospital people were mean to me" stories. We try to do what's medically best and the parents think we could have done something much easier which they don't understand is in fact riskier, so they think we were just being mean.

Do you know why women are sent home if they aren't dilating? Because active labour is regular contractions which cause cervical changes. Prodromal labor is not the same thing and can go on for days. Should they be sitting in labor and delivery all that time? Those women are sent home because we can't just give them oxytocin and speed things up so they can deliver naturally. The opposite is actually more likely to happen if we did that. Their odds of a c-section increase DRAMATICALLY if they are admitted before 3 cm or if they aren't having cervical changes. To encourage natural childbirth and NOT treat it like an illness, we have to send women home if they aren't in active labour. Starting them on oxytocin means hooking them up to continuous fetal heart monitoring, often starting an epidural and increasing their risk of complications and decreasing their chances of a natural birth if they had a previous c-section. Most hospitals have a protocol to not admit women in prodromal labor for that reason. Having worked L&D in 3 Canadian hospitals the policy was always demerol and sending them home until the contractions were more regular, not because we wanted to get back to our card game but because we wanted to give the mother the best chance for a natural and healthy delivery. They can go have a hot bath, take a walk, do whatever they want to make themselves more comfortable and speed labor up. Unfortunately we don't have the ability to make childbirth easy or perfectly comfortable. We can't magically make their labor fast without serious interventions and risks.

Trust me, women do request epidurals without anyone offering. They aren't coming in completely ignorant of their options. Most have taken prenatal classes which prepare them for what they'll experience and they often come in with birth plans. I've never seen a birth plan that didn't include the mother's plans for pain control. Unless they are at a small rural hospital, epidurals are available. Women with back labor and women with regular labor pains both get them. It is a significant intervention, and it's the most likely result of hooking a woman with prodromal labor up to oxytocin btw. They need not paralyze a woman from the waist down either. "Walking epidurals" are the newest thing, though most women want to be completely without sensation. They do often slow contractions and that means we have to start oxytocin, which I'm surprised you're in favor of using.

I wonder how much time you've spent in labor and delivery units to be able to make such sweeping statements about what we do because it certainly doesn't describe the units I've worked on.

 

[Curiosity]

Will and Jake's Mom

I can't remember the child actor who has had occasional roles playing a child/teen with Down Syndrome...only he preferred to call it "Up" Syndrome.

I think it is neat you have comparisons by having twins and no doubt they will grow up being very close, learning from each other and finding ways to cope with the outside world which I think is sadly out of the loop when it comes to Down Syndrome information.

Thank you so much for sharing your stories and more to come (I hope).

 

[Ariadne]

We try to do what's medically best and the parents think we could have done something much easier which they don't understand is in fact riskier, so they think we were just being mean...

I read this article this morning and wonder what you think about the proposal: http://www.canada.com/calgaryherald/news/story.html?id=c8dae253-ab4d-4612-9686-2d7bd64bdae0

"The Calgary Health Region's chief of gynecology has stepped down over concerns surrounding plans to build a new maternity hospital -- fears for patient safety that are echoed by 10 local obstetricians.
As the Herald reported Wednesday, the CHR is preparing a proposal to build a maternal-newborn facility beside the new Alberta Children's Hospital.
It will cost up to $300 million.
But the obstetricians question the safety of delivering babies at the planned facility, particularly for high-risk pregnant women, noting it wouldn't have an on-site intensive-care unit to handle complications such as extreme bleeding from childbirth." (more at link)

Women that develop high risk characteristics would have to be moved to a different, yet close by, hospital and presumably their babies would stay at the new hospital.

 

[Kreskin]

The irony of the present testing recommendations is that those who are 35+ are better prepared in every way to care for a special needs child. A 22 year old isn't ready to raise a cat. I'm all for giving the under 35 group every opportunity to educate themselves about where their lives are going and offer them the tools to do it. No one has to be tested on a mandatory basis but give them the information and resources necessary to be better parents, special needs or not. Many already get "entertainment" ultrasounds for the purpose of imaging the fetus for their scrapbooks. Better they get ultrasounds for the right reason and right test.

 

[Ariadne]

The irony of the present testing recommendations is that those who are 35+ are better prepared in every way to care for a special needs child. A 22 year old isn't ready to raise a cat. I'm all for giving the under 35 group every opportunity to educate themselves about where their lives are going and offer them the tools to do it. No one has to be tested on a mandatory basis but give them the information and resources necessary to be better parents, special needs or not. Many already get "entertainment" ultrasounds for the purpose of imaging the fetus for their scrapbooks. Better they get ultrasounds for the right reason and right test.

I'm all for information, education and options but I am concerned that this will go the way of the standard ultrasound ... an unnecessary but convenient and routine part of prenatal care. What it sounds like to me is permission to change the routine ultrasound such that, from now on, the deep intense waves will be applied to all babies necks as part of the regular exam. I realize that special training is required, so most likely ultrasound technicians will be given the training workshop and that will be that.

 

[tracy]

I read this article this morning and wonder what you think about the proposal: http://www.canada.com/calgaryherald/news/story.html?id=c8dae253-ab4d-4612-9686-2d7bd64bdae0

"The Calgary Health Region's chief of gynecology has stepped down over concerns surrounding plans to build a new maternity hospital -- fears for patient safety that are echoed by 10 local obstetricians.
As the Herald reported Wednesday, the CHR is preparing a proposal to build a maternal-newborn facility beside the new Alberta Children's Hospital.
It will cost up to $300 million.
But the obstetricians question the safety of delivering babies at the planned facility, particularly for high-risk pregnant women, noting it wouldn't have an on-site intensive-care unit to handle complications such as extreme bleeding from childbirth." (more at link)

Women that develop high risk characteristics would have to be moved to a different, yet close by, hospital and presumably their babies would stay at the new hospital.

It sounds like infants will still have immediate access to all the NICU bells and whistles which is ideal. I would prefer all laboring women also have access to the highest standards of intensive care on site should they need it, but that is pretty unrealistic (every hospital that does deliveries can't support that). At the very least if they are going to be doing high risk deliveries they need dedicated specialists and a high risk unit. For healthy moms, this place seems perfectly reasonable to me. When you think about it, most low risk women in Canada don't deliver in hospitals with the highest available acuity units. Many are choosing midwives or GPs even rather than OBs. I know if I were to give birth and was low risk, my preference would be a midwife, so I can't say I think it's necessary for low risk women to all have access to high risk perinatologists and neonatologists.