MOSAIC MOMENTS

Yesterday marked a very sad day for our family at IMDSA.  Last week we heard of a family who had received the news that their baby would have Down syndrome. Like any family receiving this news, they were shocked and afraid.  They were not unfamiliar with Down syndrome completely. They had an adult niece with mosaic Down syndrome. But in their minds, having a child with complete Down syndrome would be just unbearable. Last week, they went to a counseling session, but for some reason the father was not allowed in the room. So, this mother, scared and confused, talked with the counselor without her husband about the future of their baby. After the meeting she was resolved to abort this baby. Yesterday, although her husband was against it, sadly she followed through with her resolution and ended her four month pregnancy.

Many people may feel outraged that this mother choose to abort her baby. Some may not even care. I am not here to judge, but I do want to address why people abort their babies when discovering they may have Down syndrome.

Mainly it is out of fear. Fear of the unknown. Fear that raising the child will be too difficult. Fear that they will fail as parents. Fear that having a child with Down syndrome will “change their life”.

Unfortunately, this fear is fueled by the doctors and counselors delivering the news of this diagnosis. The majority of these professionals never know anything about Down syndrome outside of what their outdated text books tell them. They have never had the opportunity to get to know a person with Down syndrome. Yes, they deliver babies that have Down syndrome, but within a few days those babies go home to be with their families. They don’t see their first smile. They don’t hear their first laugh or first words. They don’t witness the absolute joy of the baby’s first steps. And they don’t watch this child grow up to be an adult who later finds a job and eventually falls in love.

Instead, they tell the parents that having a child with Down syndrome will be a burden to their family. They tell the parents of all the worst case scenarios. They paint a picture of a very ill child who will need constant medical care that would skyrocket the family’s financial limits. They tell the parents that their child will not read or write. They tell the parents that the child will require so much care that their other children would suffer. They tell the parents that the strain will be far too much to bare and their marriage may crumble under the burden of this child. Then, they “suggest” (strongly) that the parents abort the baby and try again later.

Doctors are supposed to be right. They are, after all, the “professionals”. And, in a lot of cases, doctors are right. But in this case, they are wrong. 

People with Down syndrome can have health problems. They can be born with heart defects. They can have Thyroid disease, digestion problems, and even Leukemia.

Of course, so can everyone else in the world who doesn’t have Down syndrome. When a child is born with a heart defect sometimes surgery isn’t even needed. If it is needed, most children bounce back pretty quickly after surgery. If they have Thyroid disease, a simple pill a day will keep that under control. Digestion problems? It depends on what the problem is. Most of these can be controlled with diet, some require surgery or medicine. Leukemia? The good news is, if your child has Leukemia and has Down syndrome, they have a much higher survival rate than those without Down syndrome. Will it cost you more to have a child with Down syndrome as opposed to having a child without Down syndrome? Read Here about those real statistics.

Children with Down syndrome usually do require extra help in school, but that doesn’t mean they can’t read or write.  It may take them a little longer to get it, but they will get it.

Will your other children suffer?  Actually, current research suggests that siblings of children with Down syndrome are more positively affected than negatively. You can read that research here.

Without a doubt, having a child with Down syndrome will change your life! But not in the ways that most people think.  Having a child-with Down syndrome, mosaic Down syndrome, or no syndrome at all, WILL CHANGE YOUR LIFE! Because having a child makes you a completely different person than you were before. You are responsible for another human being. And that is a big responsibility. The child will look to you for guidance, shelter, nourishment, and love.

And, if you happen to have a child with Down syndrome, then you may learn things a little differently than you would if your child does not have Down syndrome. Please make note that I said, “you may learn things a little differently”. Having a child is a learning experience. It doesn’t matter if they have Down syndrome or not. You will screw up along the way. You will NOT be the perfect parent. Your child will not be the “perfect child” either. There are no guarantees in life.

If you find out that you are pregnant and that your child may have Down syndrome or mosaic Down syndrome and you feel as though you can not be a parent to this child. That is Ok too. Some people just don’t feel like they are cut out to be a parent of a child with Down syndrome. But before you go through with your abortion, please keep in mind that there is a two-year waiting period for families who want to adopt a child with Down syndrome.

Why is there such a long waiting period?

Because over 90% of babies with Down syndrome are aborted each year and over 90% of families want these children more than any other child in the world!

No one will blame you for putting your child up for adoption. In fact, they may admire you just a little bit more for the extreme courage it took for you to say, “I want the very best for my child.”

In the research study conducted by VCU/MCV that we just recently posted on International Mosaic Down Syndrome Association’s website, a very interesting finding occurred. When comparing those with mosaic Down syndrome and Down syndrome researchers found that individuals with mosaic Down syndrome had a more frequent occurrence of congenital heart defects compared to those with complete Trisomy 21 Down syndrome.  Additionally, the found that individuals with mosaic Down syndrome had some specific heart defects that are not commonly found in those with complete Trisomy 21 Down syndrome.

As they continued to research this, they found that those with a higher percentage of Trisomy 21 cells in their blood had an increased risk of congenital heart defects compared to those who have lower percentages in their blood. 

I am sure hearing this for the very young parent or perhaps a parent who is prenatally diagnosed, at this point you are about to freak out completely! 

Take a deep breath……

First of all, I have found that there is a common misconception about these heart defects. Congenital means they are born with it.  You can not develop a congenital heart defect. Either it is there or it isn’t. 

For those who know their baby does have a congenital heart defect…. I know this is scary to think about. Heart problems are a huge thing! Our heart is very important! However, the majority of these heart defects that occur in children with Down syndrome and mosaic Down syndrome either ‘fix’ themselves as the child grows the hole closes or the problem disappears.

Then, there are others who do require surgery.  But now, because of the extreme advances in medicine, heart surgery is not near the issue it used to be. Most children are up and running around way before the doctor thinks they should be and they rarely experience any complications after the surgery. (depending on what it is)

This is the chart included in this study to demonstrate the heart defects found in those with mosaic Down syndrome compared to those with Trisomy 21 Down syndrome. 

 a Number of people having heart defect (number surgically corrected).
b Several subjects had more than one heart defect. Thus, the total number of specific defects is greater than the total number of individuals having a congenital heart defect.

I hope this helps you to understand this some. If you have questions feel free to leave a comment.

Last night the Discovery Health channel aired their Mystery Diagnosis “Black and Blue Baby” episode about Hannah Hannum and how she was diagnosed with a rare form of Leukemia called Myelodysplastic syndrome, then later it was discovered that the reason she had this rare form of Leukemia was the percentage of extra 21st chromosomes in her body that resulted in mosaic Down syndrome.

Hannah was lucky. She responded well the the chemotherapy that they were administering. However, if they had not discovered that she had mosaic Down syndrome, and gone ahead with the extra treatment they were planning, more than likely this would have been fatal for young Hannah!

Individuals with any type of Leukemia have a different kind of treatment than those without Down syndrome. This is because of the extra chromosomes and how they react to the chemotherapy. And without a diagnosis, individuals with mosaic Down syndrome can become very sick and even die because although most illnesses associated with mosaic Down syndrome are treatable, without knowing about the extra chromosomes they may not be treated properly or those illnesses may be left unnoticed until it is too late.

Dr. Peter Shaw from the Children’s Hospital of Pittsburgh was the doctor who treated Hannah Hannum and discovered the mosaic Down syndrome as well as a translocation of chromosomes 1 and 19. After this discovery, he recommended that all Leukemia patients who have acute myelogenous leukemia (AML) or Myelodysplastic syndrome (MDS) be evaluated for mosaic Down syndrome regardless if they had physical charateristics or other clinical features such as developmental delays associated with Down syndrome.

It is important to remember that mosaic Down syndrome is different in many ways from Down syndrome as much as it can be similar. Although individuals may not have the physical characteristics as one with Down syndrome or they may meet their milestones at an earlier age than those with Down syndrome, they still are at risk for certain health problems, developmental delays and learning differences.

Have a Question? Leave a Comment by clicking below on the comments link.

Tonight is the night! We have been waiting about a year for this day to arrive and it is finally here! Tonight at 10pm EST on Mystery Diagnosis we will have a small part of telling others about mosaic Down syndrome! This is a huge step for International Mosaic Down Syndrome Association as we will be able to reach so many more families whose children have mosaic Down syndrome and do not know that we are here to provide them with the support, information and research that we work so hard to provide to everyone!

Special Thanks goes to Holly Hannum for telling her daughter, Hannah Hannum’s story of being diagnosed with Myelodysplastic syndrome.(MDS) and later mosaic Down syndrome (mDs). Also, special thanks to Sue Johnson for offering her daughter Isabella to play the part of young Hannah! Not many times on Mystery Diagnosis do you get the opportunity to have 2 individuals with the same diagnosis and both were diagnosed later in life. These families did a great job of telling the story and if there is anything left out we will totally leave that in the hands of editing at the Discovery Health Channel.

If you would like to discuss this story after the show, I will be on Twitter (if I can figure it out enough! lol) You can find me on twitter by just clicking the box to the left of this post that says “follow” on Twitter.  To find out more and read more stories look below.

On April 6, 2009 the American station, Discovery Health, highlights one of our families’ stories on Mystery Diagnosis. Hannah Hannum is one of thousands of individuals with mosaic Down syndrome who was diagnosed later in life.

The average age for individuals to be diagnosed with mosaic Down syndrome is 1-4 years of age. The most common reason for this late diagnosis is the lack of knowledge in the medical field on this rare form of Down syndrome. However, many individuals can go undiagnosed up into adulthood and there are still thousands who never receive a diagnosis.

For more information on mosaic Down syndrome please visit our FAQ’s of MDS

If you feel that you or a loved one may have mosaic Down syndrome, please contact us and we will be happy to answer your questions.

We invite you to meet some of our families who have received this diagnosis later in life.

Meet Hannah diagnosed at age 3*

Meet Isabella diagnosed at age 10 months*

Meet Ryan diagnosed at age 3

Meet Allison diagnosed at age 5

Meet Tim diagnosed at age 2

Meet Christina diagnosed at age 25

Meet Rachel diagnosed at age 6 months

Meet Emily diagnosed at age 18 months

Meet Aidan diagnosed at age 2

*featured on Mystery Diagnosis

International Mosaic Down Syndrome Association provides support, information and research to all individuals and families touched by mosaic Down syndrome. IMDSA is a nonprofit organization, and is dependent completely upon generous donations to continue its mission of helping families and individuals with MDS. All donations are tax-deductible to the fullest extent of the law.

Many people have asked about what they can do with their children during the Down Syndrome Research & Awareness Conference in Cincinnati in July. International Mosaic Down Syndrome Association holds a very special Kid Konference for children ages 2-12 and Youth Conference for ages 13-adult.

When we first began our conferences back in 2004, we saw two needs that needed to be filled.

First, our parents and family members needed to be able to listen to workshop presenters, and ask questions that are sometimes difficult and uncomfortable in front of children. These families needed to be able to relax and not worry about what their children were doing and that they were safe. And, the children didn’t need to be bored during these hours the parents were away.

The second need that we saw was that geneticists, teachers, nurses, doctors and therapists were learning only the basics in their schooling about Down syndrome and very few had even heard about mosaic Down syndrome. These students were only learning what their books told them and they didn’t have a real perspective on what it truly meant to have extra chromosomes for the family and for the individual.

So, we combined these needs and developed our Kid Konference. Children ages 2-12 with Down syndrome, mosaic Down syndrome and their siblings are divided into three age groups. 2-5, 6-9 and 10-12. Within these groups, we invite students who are learning in a field that will put them in places where children with Down syndrome and mosaic Down syndrome will be. We do background checks on each student to ensure the children’s safety and the students supervise the children on Saturday and Sunday during their workshops. This enables students to learn what it really means to have Down syndrome or mosaic Down syndrome and gives them hands on experience with the children. Every student who attends this program also is allowed to attend the workshops of their choice to further enhance their careers and each receive a certificate of participation at the end of the conference. Every student who has attended this program has said that it has truly changed their lives and it is something that they will always remember.

Currently, we are still working on finalizing this schedule for our Kid Konference and each presentation will be geared towards the age group. But to give you a good idea about what is in store for the children, we are planning on the following topics:

• Music Therapy & Fun
• Art Lesson (will be displayed at banquet)
• Yoga for Kids
• Karate Moves for Fun
• Sports
• Everyone Can Cook
• What to do about Strangers
• How to deal with Bullies
• Tumble Bus
• Magician
• Clown
• Coloring with Coco the Bird (The Coco Keys Water Resort Mascot)

I hope this gives you a good idea about the Kid Konference! The cost is only $10 per child and this includes 2 snacks on Saturday and 1 snack on Sunday. 

Early Registration ends on Tuesday, March 31st!  After this prices for the main conference will go up. For more information on this and how to register, click here.

Tomorrow I will give you a little insight on what to expect for the Youth Conference!

When you are told that your child has Down syndrome or mosaic Down syndrome you immediately form an image in your mind. It could be a child you saw in school or down the street from your house that had special needs. Maybe you saw a TV show or movie about Down syndrome and that was your image. Or, maybe you had some medical background and you thought about all that you had read up on the subject. Whatever it was, I think everyone does form an image, and in most cases you discover that that image in your mind was completely opposite of the person your child has become.

For me, I imagined Scott. Scott was a boy in my elementary school who had some sort of delay that impaired his ability to communicate articulately and he had braces on his legs that clanged when he walked. Scott was unable to learn the way my other classmates learned and he invariably could not close his mouth completely which was unsightly during lunch. But these were not the things that bothered me about Scott at all. What bothered me is that his parents dressed him in black dress slacks, a white button up shirt complete with a plastic pocket protector for his pens, black dress shoes and black-framed eye glasses that slid down his nose despite the large roll of tape fastened to the middle. To me and my classmates, Scott was different because he dressed differently than the rest of us. If it were not for his clothes, we probably would have accepted him much easier.

So, my first thought, silly as it may sound, was that Tim would never dress differently than his peers!

But I know that many had other thoughts in their mind. Other fears that were unfounded later on. So, today, please share what those fears were. What did you worry about after you were told your child had Down syndrome or mosaic Down syndrome and what made you realize that those concerns were only because of the image you had formed in your mind?

As parents of children with Down syndrome or mosaic Down syndrome we often worry about so many things when they are first diagnosed. Yesterday, I asked what your biggest concern was when your child was first diagnosed. Most of the comments on this question were united in that they worried more about themselves instead of their child’s condition. I thought that was an interesting take on things, but not at all wrong!

When you first have a child, any child, your whole entire life turns around! All of the sudden you are completely responsible for this tiny life and your parenting instincts come into play. However, when you have never had a child before, this can be a very scary experience and it really doesn’t matter if they child has Down syndrome or not! In these instances from our readers these children were their first born. (to the best of my knowledge) So, of course they were worried about how having this child was going to change their life! And, when you add “Dr. I have bad news” into the equation, you are more than likely going to worry all the more! You worry about how it is going to affect your lifestyle. I think the biggest thing that comes to mind is that you wonder if you will have to make changes to the way you live. The answer is in some ways Yes and in some ways No. 

Yes, because you will find that when you have a child, any child, you can no longer jump up at 11pm and say, “Hey, lets go out!” Because with any child, every trip is a planned process of packing half their life into a diaper bag, and still planning around naps, feeding, sickness, weather, etc. And, yes, your life does change when you have a child with any special needs, because you do a few things differently than you would a child without special needs. You may have more doctor appointments. Your child may need therapy to help with developmental delays. You wind up learning a whole new language that only other parents of children with special needs understands! You almost always have a medical degree equivalent to at least an MD, just without the shiny certificate hanging on the wall. Instead, your shiny certificate is that beautiful picture painted, drawn, colored or scribbled that adorns your refrigerator door.

And then, the answer is also No. No because you learn that Life Goes On! And, because no matter what, your child is a child first! Your child will still be mischievous and get into trouble even though they knew better to do what ever it was they ventured out to do. Your child will still smile and laugh and love you unconditionally just like any other child. Your child will frustrate you, worry you, scare you, make you happy, make you proud, and make you wonder what you ever did without them!

I have five sons. Each are a challenge in their own way. And, each have made me angry, embarrassed, sad, frustrated, happy, and extremely proud. 

Is it different to have a child with Down syndrome or mosaic Down syndrome compared to having a child without extra chromosomes? Yes! It is different for sure! But different does not mean worse!

It is hard to believe that we have been planning for our Down Syndrome Research & Awareness Conference  for ten months now! No wonder I am so tired!

On April 1, 2009, the conference registration prices will go up. Not considerably so, but this is our early registration deadline and the price will change. 

Many ask, how much it cost to attend the conference.  Well, it depends on how many you have coming with you!

If you register before March 31 and you are a member of IMDSA, the registration for the main conference is less expensive than those who are not members. However, you can become a member for only $25 and this will give you a free subscription to our quarterly newsletter MOSAIC WORLD that is packed with information pertaining to not only mosaic Down syndrome but also Down syndrome. These articles are all very helpful in raising your child no matter how old or young they are. You also will receive discounts such as this and our information packet full of info and inspiration. If you wish to become a member, even for the discount, that is ok with us! You can click here for more details. 

To register, click here for details.

We realize that many people are struggling right now to make ends meet and we want more than anything for you to be able to attend this conference! We are, doing all we can to help make it as easy and affordable as possible.  To make this easier, we have compiled a list of possible organizations that may help you attend the conference. Don’t be shy about this! Many organizations have funds set aside to help you attend conferences such as ours! So, please utilize this list!

IMDSA is offering two (2) conference scholarships to IMDSA members. Please click here for more details.

DSAGC is offering scholarships to families in their immediate area to attend this conference. Please click here for more details.

There are many organizations that have funds set aside to help families like yours attend conferences that will enhance your parenting to your child with special needs. If you live within the United States of America please click these agencies below and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

The ARC

United Way

Developmental Disabilities Council

Yellow Pages for Kids

If you live outside of the United States and have a current VISA or Passport contact the following organizations and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

United Way

If you have not yet seen our presenter list you can click here for that.

I am very excited about our upcoming conference and I do hope that I can meet all of you there! If you have any questions, just ask!

Last night, on The Tonight Show with Jay Leno, US President Barak Obama insulted millions of people throughout the world when comparing his poor bowling skills to those of the Special Olympics athletes.

Obama told host Jay Leno that his bowling score, with practice, had risen to 129.

“That’s very good, Mr. President,” Leno deadpanned.

It’s “like the Special Olympics or something,” the president replied.

The problem is, the majority of Special Olympic Athletes bowl far better than Obama’s measly 129 score. They are hard working athletes just like any Olympic athlete is and they take their sport just a seriously as any athlete does. 

A White House spokesman said the remark was not intended to disparage Special Olympics athletes, who have intellectual disabilities.

The president “thinks the Special Olympics is a wonderful program that gives an opportunity for people with disabilities from around the world,” said White House deputy press secretary Bill Burton.

The Special Olympics CEO, Tim Shriver said that Obama called him and “expressed his disappointment and he apologized I think in a way that was very moving. He expressed that he didn’t intend to humiliate this population, certainly did not want to embarrass or give anybody any more reason for pain or, just, you know, kind of, suffering I would say.”

During a Good Morning America interview, Tim Shriver said “Well I think it’s important to see that words hurt and words do matter, and these words that in some respect can be seen as humiliating or a put-down to people with special needs do cause pain and they do result in stereotypes. They do result in behavior that is neglectful and almost oppressive of people with special needs. This kind of language needs to be a teachable moment I think for our country. I would hope every parent who is at home this morning watching this show  could turn to their children and say this is a chance for us to recognize that when we talk about Special Olympics, when we talk about people with special needs, let’s make sure we talk about it in an affirming way.”

When people say things, no matter what the words or who it is about, this is something that is in their mind in the first place. Obama, no matter how hard he tries to back pedal his remarks, obviously views people in the Special Olympics as less than him. He obviously believes that people with special needs have disabilities instead of Abilities. Obama is sadly mistaken on the abilities of those with special needs-especially when it comes to bowling. But what is even more disturbing is when he goes home tonight to his two little girls, who are in the midst of all this whirlwind of celebrity status, he will continue on with his private views of those with special needs and continue to teach his daughters that these people-the ones who learn differently-are people less than them, that it is OK to make these people be the brunt of their jokes-as long as you don’t do it publicly.

Comments like those made by Obama are not “missteps” or “blunders”. Comments do not suddenly come from your mouth if they were not in your head in the first place. And when a comment comes from a powerful man that is leading a nation, what kind of example does that lead for this country and all the other countries throughout the world?

Mrs. Whitehouse posted a comment on a past article that I wrote concerning getting a proper diagnosis of mosaic Down syndrome. 

Her question was a good one and one that I see quite often. She said her son was diagnosed with mosaic Down syndrome last year after years of looking for a diagnosis. She stated that the typical lifespan of a person with Down syndrome is 55 years old and she wanted to know if this applied to those with mosaic Down syndrome as well.

Because this is such a good question and one that needs to be addressed in extent, I thought it would be much better for me to address the issue here. So, I am taking a day off on telling you about the Conference Presenters we are having at  our Cincinnati conference in July to answer this question.

It is important to remember that no one dies from having Down syndrome or mosaic Down syndrome. People can die from complications surrounding health problems that can sometimes be present in those with Down syndrome such as a heart defect, thyroid disease, or digestive issues just to name a few.

However, right now, in 2009, we are looking at research papers that are at least a few years old that say the life expectancy of a person with Down syndrome is 55 years old.

So, first we need to look back 55 years and see what kind of medical treatments were available for people  with Down syndrome at birth.

There were no heart surgeries for these individuals. There was no thyroid medicine. And, digestive issues were left untreated. If these individuals had these or other medical issues they could have gone unnoticed and/or untreated all these years and eventually, at around 55 or younger their bodies gave out. 

We also need to remember that 55 years old is an estimate and there are many even today who have lived well into their 80’s! This 55 is just a round number that was determined by some research of a certain group of individuals.

And, it is important also to consider that the majority of individuals with Down syndrome 55 years ago grew up in an institution, lived their lives in the same place, and most died in the same place! They were not nurtured or educated.

Now, lets look at today….

If  your child has a heart condition, more than likely he or she can have heart surgery and it will be fixed.

If your child has a thyroid condition it can be managed with a simple pill every day. 

If your child has most any medical problems associated with Down syndrome these medical problems can usually be fixed or treated successfully.

Children, at least in America, are no longer put into institutions (Thank God!) and they are able to go to school, get an education and learn all they need to know to help them succeed.

They are loved unconditionally and cared for extremely.

Although I do not claim to be able to predict the future, I am pretty confident that today’s generation of individuals with Down syndrome and mosaic Down syndrome will live long, fulfilling lives as long as they are loved, cared for and their medical needs are addressed. However, there are many without Down syndrome who die at an early age for whatever reason. Unfortunately, life has no guarantees.

It is important to remember that those with mosaic Down syndrome can have the same medical conditions associated with Down syndrome, so the same Down Syndrome Healthcare Guidelines apply to everyone who has any amount of extra 21st chromosomes. 

Mrs. Whitehouse, I would like to invite you and any parents of children (of any age) with mosaic Down syndrome to join our online support group. You can do so by clicking here. This is a great group of parents throughout the world who are very caring and welcoming to everyone! 

Also, I invite you to visit International Mosaic Down Syndrome Association’s website and consider becoming a member as well. We provide lots of support, information and research and have many programs to help our families throughout the world.