Saturday, October 1, 2011

Myths About Down syndrome

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Ok, I am going to attempt this.  I am going to try to blog every day for the month of October.  I think I tried last year, but I'm pretty sure I did not accomplish it.  Probably didn't help that we were in Ukraine for about half of the month and then home with the girls the last part with a couple 24 hour plane rides in between. :)  Things got really busy, and my blogging definitely didn't reach high on the priority list....  This year actually seems just as busy, but we are at least in a routine now and it seems sort of possible.  Ha!  I will try! 

So anyway, I am going to start with some myths about Down syndrome.  I thought it was interesting and thought you might think so, too.  I got this information from here, and yes I copied it to share it with you, but I wanted to give credit where credit was due.  So enjoy!

Down Syndrome Myths and Facts


I get emails or phone calls very often from families who have a new diagnosis of T21. Sometimes it is their friends or relatives who make the first contact. Then soon, the parents are emailing or calling. This has brought me a unique perspective of the entire process of receiving the news of Trisomy 21, Down syndrome, in utero. I would love to share some of the things that are said to me, and clear up any confusion.

Myth #1:

My child will die young, as individuals with Down syndrome do not live longer than the mid 20′s

Reality: This is simply not true. Individuals are living well into their 50′s and even longer, now that proper medical care is being given to treat heart or other life threatening conditions. Many individuals are capable of employment, living independently, and enjoy many hobbies and activites. See our T21 individuals in the news.

Myth #2:

Your child will suffer.

Reality: Again, this could not be further from the truth. Many people in the world require corrective surgery. If your child needs surgery for any reason, the medical care given to individuals with Ds is wonderful. You can expect your child to do beautifully, and continue to thrive. While as many as 30-50% my have a heart condition, only approximately 5% will require open heart. The care of that 5%, by qualified pediatric cardiologists, is remarkable. The remaining 25-45% will have other less invasive procedures, or just be monitored. The cardiac care these days is absolutely amazing!! All other corrective surgery is also incredible. Any medical conditions can be treated today, unlike years ago when treatment was unknown. With proper medical care, individuals go on to live happy and wonderful lives!

Myth #3:

The physicians have told me that my child’s Down syndrome is worse than other cases.

Reality: This is simply impossible to tell in utero. Or even right at birth for that matter. Even children with many surgical needs have gone on to do amazing things. Karen Gaffney is an amazing example of an individual who needed much corrective surgery, and has gone on to do amazing things. She is not unique, this happens all over the world. I have met soo many families who have seen their family member through medical care, and the individual goes on to do beautifully in every way.

Myth #4:

The physicians have told me my child has a mild case of Down syndrome.

Reality: While there are many different abilities for individuals with Down syndrome, a physican can not tell in utero or at birth, how a child will fare. Most instances where an individual has a more difficult time learning or behaving, is indication of a dual diagnosis. Typical children have this exact possiblity. If a child needs corrective surgery, that does notmean they will have severe developmental delays. Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.

Myth #5:

Your chances of having a child with Down syndrome increases greatly after age 35.

Reality: Yes, indeed your chances increase. But let’s discuss the word greatly. When we see the estimated rates in the books, you may see that at age 20 it is 1/1231. At age 25 it is1/887. At age 30 it is 1/685. At age 35 it is 1/274. And finally at age 40 it is 1/78. So, yes, your chance does increase with age. And boy, when you put it that way, it sure does look like it increases greatly. However, if you were to look at these numbers in percentages, they look a little more interesting. Age 20: .08%. Age 30: .15%. Age 35: .36%. Age 40: 1%. So as one physician said to us, “Leave the guilt at the door”, because at age 39, our estimated risk was 1/100. That means there was a 1% chance of having a child with Down syndrome. That means we had a 99% chance of not having a child with Down syndrome. He went on to add, “Who would think to not have a child if you have a 99% chance of this not happening?” Now, to set the record straight, this was the way he put it. We say, ”Wow, what a miracle. We had a 99% chance of not having this gift from God. Whew, that was close!” We don’t ever want to imagine what our life would be like with out our beautiful daughter. So indeed, the numbers do increase. However, when you look at it from a percentage view point, it sure makes this drastic rise, that many professionals talk about, seem pretty insignificant doesn’t it? You have a better chance of having other things happen to you. In fact, there are a lot of ailments we all have a greater chance of having than the chance of being blessed with a child with Down syndrome. One additional point to add to this; 80% of all children born with Ds are born to mothers 35 and under. Many think this happens only to older mothers, since there is an increase. However, as you can see, the great increase is not as great as is told, so with the decrease in women having children at older ages, this makes the number of children with Down syndrome being born more often to younger moms. Numbers are interesting aren’t they?

Myth #6:

Bringing a child who has Down syndrome into your family will be harmful to your other children.
Reality: Again, just not true! In fact it is just the opposite. Your other children actually have a higher chance of becoming more compassionate and accepting of other people. The benefits have been a best kept secret until Dr. Brian Skotko did a study on the affects of having a sibling with Down syndrome. Another unexpected blessing.

Myth #7:

There is a higher divorce rate for families who have a child with Down syndrome.

Reality: While divorce can happen in any family, the studies are actually showing it is currently lower in the families who have a member who happens to have Trisomy 21. Perhaps it has something to do with the many lessons they teach us about life. Click here to see more on this.

Myth #8:

This will ruin your life.

Reality: It has indeed been a new journey for all of our families, and one that can require many graces at times. (Show me parenting that doesn’t need more at some times!) But ruining our lives… that is simply not happening! An extra chromosome is all it is. The fear of that, is much more paralyzing than the reality. Enjoy your pregnancy! Enjoy your baby!

I just wanted to add that it is probably obvious that we don't think having a baby with Down syndrome has ruined our life.  As a matter of fact, it is quite the opposite!  That is not to say that we didn't have a tough time when we first got the news.  Madalyn was our first baby girl after 6 boys.  We were not expecting to have another baby, but once we accepted that, we were pretty happy.  And finding out she was a girl was so exciting! But then we found out she also had DS and that was tough.  Add to that, we knew she was going to have a bowel issue (Duodenal Atresia) that would require surgery at birth and heart surgery later, and you have a recipe for a little bit of stress.  And it continues to be hard at times.  Parenting a child with DS is not always easy.  Let's face it, parenting itself is not easy! But it is so very worth it!!  It is the farthest thing from ruining a life that I could ever think of.  As a matter of fact, out of all the parents who have children with DS that I know, not one of them has ever indicated anything like that to me.  It has always been the quite the opposite! 

That may be because most (but certainly not all) of the parents I talk to are Reece's Rainbow families.  :) And you know what that means!  These are the people who have discovered what a joy it is to raise a child with DS!  And they are bringing another child with DS into their family.  Sometimes even 2 or 3 at a time!  Kinda like us...  :))  Ha!  But the really cool part is that many of these families are adopting kids with DS without having had a child with Down syndrome previously!!  I just think that is really super cool!!  What an amazing organization Reece's Rainbow is!!  (But that's the subject of another post).  I could go on and on about this, so I better stop now. 

I think I will go love on my little girlies before bedtime...

Good night!!

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For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.