Welcome Suzanne and Dalton!

[Guest guest]

Hi Everyone!

We have a new family joining us. Here is what she had to say....

Hi my name is Suzanne. We have a very handsome 2 1/2 year

old son Dalton with MDS. I would love to join this

group as there is not much information out there for MDS want to get

connected. Thank you!

Welcome to our family Suzanne. I am so glad you have joined us! Please tell us

all about Dalton!

Kristy Colvin

IMDSA President & Conference Coordinator

SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE!

www.imdsa.com

[Guest guest]

Dalton is just wonderful! We found out while I was 24 weeks pregnant

that Dalton was Mosaic Down Syndrome and Mosaic XYY. He had AVSD

surgery at 3 months of age and came home a week after surgery. He

had some problems with pulmonary hypertension, but that has since

passed! He's 2 1/2 and not walking yet - very stubborn! Hopefully

soon though! We live in Colorado and have met some wonderful people

throught Dalton, that's for sure!

>

> Hi Everyone!

> We have a new family joining us. Here is what she had to say....

>

> Hi my name is Suzanne. We have a very handsome 2 1/2 year

> old son Dalton with MDS. I would love to join this

> group as there is not much information out there for MDS want to get

> connected. Thank you!

>

>

> Welcome to our family Suzanne. I am so glad you have joined us!

Please tell us all about Dalton!

>

> Kristy Colvin

> IMDSA President & Conference Coordinator

> SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE!

> www.imdsa.com

>

>

>

[Guest guest]

Hi Suzanne,

How did you find out Dalton had MDS? Was it through bloodwork, Amnio. or both?

Did the ultrasounds show heart conditions or anything else? What it Mosiac XYY?

Does anyone else in the family has Downs?

My bloodwork showed a high level for Downs, 1 out of 37 for downs baby, not

to be thought of as a 37% chance as the gen. conselor described. I was

recommended to have a CVS (same as amnio, except done earlier) I decliced for

fear of miscarriage (2 already) I decided to have the first screening, bloodwork

and ultrasound only.. My next 2 ultrasounds were perfect, normal measurements of

the baby's organs, confirmed baby girl and no extra skin on the back of the

neck. This lead all of the health care professionals and us to believe there

was nothing to worry about. I would have been ok anyway if I found out and that

is why I refused to have a cvs for fear of risk of lossing her, my niece (20)

also has Downs. So the test results seemed like false-positive which is

common.. In a way I am glad I didn't know, the mind can wonder and make the

unknown seem bleak. So when Sophia was born, she had slanted eyes and failed

the hearing test, but everything else was normal. I

thought maybe it's just fluid in the ears. My husband asked for the

keryotype, the staff at the hospital didn't see a reason for it, for me it was

a maybe. So we found out one week after she was born, I was devastated, I

think because my pregnancy and tests were normal, after being told there was a

chance, and then it was diagnosed. I worried how her heart was and if hearing

loss and just the unknown. All I knew was that I loved my daughter so much and

at first I was sad. With a little bit of time, I told myself to make the best of

it. Which is what I have done! I think we can all testify to that!!

Sophia mds 8 mos

Re: Welcome Suzanne and Dalton!

Dalton is just wonderful! We found out while I was 24 weeks pregnant

that Dalton was Mosaic Down Syndrome and Mosaic XYY. He had AVSD

surgery at 3 months of age and came home a week after surgery. He

had some problems with pulmonary hypertension, but that has since

passed! He's 2 1/2 and not walking yet - very stubborn! Hopefully

soon though! We live in Colorado and have met some wonderful people

throught Dalton, that's for sure!

>

> Hi Everyone!

> We have a new family joining us. Here is what she had to say....

>

> Hi my name is Suzanne. We have a very handsome 2 1/2 year

> old son Dalton with MDS. I would love to join this

> group as there is not much information out there for MDS want to get

> connected. Thank you!

>

>

> Welcome to our family Suzanne. I am so glad you have joined us!

Please tell us all about Dalton!

>

> Kristy Colvin

> IMDSA President & Conference Coordinator

> SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE!

> www.imdsa.com

>

>

>

[Guest guest]

Hi -

We had an idea at my 20 week checkup/ultrasound that Dalton had DS.

It was not a good visit for us! The ultrasound tech saw his heart

defect and told us that most babies with this heart defect have DS.

She and another doctor said some pretty rude things to us - mainly,

that we didn't look like the type family that would terminate! We

walked out of there thinking he was a monster or something, that's

how they made us feel! My OB is amazing and she talked to us and

told us to wait until I was 24 weeks and we'd do another ultrasound,

somewhere else, because his heart would be that much bigger to see!

So, at 24 weeks, another ultrasound was done, and the Dr did an

amnio, that's how we found out for sure. (My quadscreen showed no

risks!) Amnio is how we found out that he was MDS and had and extra

Y (extra male chromsome) and was mosaic in that as well. XYY is

referred to as " super male " most are tall and skinny and some are

just down right mean (mind you they've pretty much only tested

criminals in this area) So, we don't know if the extra Y will

counteract the MDS and make him a normal sized person or what? We

just have to see how he grows through the years! And no, there is no

one in our family with DS. My cousin did miscarry a baby at 20 weeks

though, they say had the same problems, heart defect and all!

He's had his heart repaired and that is about the only problem he has

had. He was on o2 for 5 months after he was born, but no other

problems. He's 2 1/2 and not walking, but hopefully very, very soon!

When we first found out he had MDS, it was tough. It made for a

really long, sad pregnancy for me, it was just the fear of the

unknown! But, I wouldn't change my Dalton for nothing, I love him

with all my heart and soul! My 4 year old daughter and he are the

lights of my life! Life would be unbearable without them!

Where do you live ? I'm in Colorado?

Suzanne

mom to Dalton 2 1/2 yrs

> >

> > Hi Everyone!

> > We have a new family joining us. Here is what she had to say....

> >

> > Hi my name is Suzanne. We have a very handsome 2 1/2 year

> > old son Dalton with MDS. I would love to join this

> > group as there is not much information out there for MDS want to

get

> > connected. Thank you!

> >

> >

> > Welcome to our family Suzanne. I am so glad you have joined us!

> Please tell us all about Dalton!

> >

> > Kristy Colvin

> > IMDSA President & Conference Coordinator

> > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE!

> > www.imdsa.com

> >

> >

> >