RE: Hello, I am new to this site

March 20, 2007

Welcome, Anja, to this site and to your family! There is a wealth of knowledge and experience here, so don't be shy about sharing your thoughts and questions. There are at least a couple of other families on the list with fraternal twins, both having DS. Hopefully they will pipe up and introduce themselves.

I am Casey, mom to (DS) and , who are almost 7 1/2. Like you, I didn't know about DS until after the birth and it was a shock, but it didn't take long to just see "" and not DS. Welcome to the adventure!

Casey

March 20, 2007

Casey, we haven't gotten an update from you lately -- how are (or are) things progressing??Casey Traver wrote: Welcome, Anja, to this site and to your family! There is a wealth of knowledge and experience here, so don't be shy about sharing your thoughts and questions. There are at least a couple of other families on the list with fraternal twins, both having DS. Hopefully they will

pipe up and introduce themselves. I am Casey, mom to (DS) and , who are almost 7 1/2. Like you, I didn't know about DS until after the birth and it was a shock, but it didn't take long to just see "" and not DS. Welcome to the adventure! Casey

March 20, 2007

Welcome Anja! I too was treated by a perinatologist for my high-risk (triplet) pregnancy, and no markers emerged in any of the level-3 ultrasounds and other tests I had. My perinatologist told us that, based on these findings, my age, etc. we had only a 1% chance of having a child with DS which I now know to be incorrect -- yet despite my attemts to explain to him how he's misinterpreting the statistics, he continues to give patients the incorrect stats. Regardless of what I would have done with the information, I feel that it was my (and other families') perogative to have correct statistics to base my decisions on... I know -- we all know -- how hard it is to get over the shock and digest the diagnosis, and I remember the months after my daughter was born wondering if I'd ever think about anything else... or if I'd ever see her as herself as opposed to as a child with DS. But things do begin to change, slowly for

me but steadily, and you'll find yourself thinking and hurting about it less and less. And -- best of all -- you'll start to see all the unique joy your boys bring and relish all their accomplishments. A woman that I know whose baby with DS is now approaching a year old emailed me this weekend to say that "she feels sorry for families who don't have a child with DS", adding that her daughter (her 4th or 5th child) had transformed the family -- in particular, her workaholic doctor husband now takes an active interest in the kids, and she is suddenly noticing all the good and generosity in the world. My daughter has transformed my own family to the point where I can't imagine life without her. I can't say that she's made things easier, but she's definitely made my life and experiences far richer and more meaningful. Sheryl Knapp, mom to Caleb, Ethan & Louisa(Ds), 7 1/2 -- Hello, I am new to this site Hi, I would like to introduce myself. My name is Anja and my dh is Wilvens. We live in the Atlanta area. I am german and my husband is haitian. We just had twin boys on March 2nd. Fabien and Marcel were diagnosed with Trisomy 21 just last week. We have a 3 year old daughter Celine. The boys are still in the NICU as they were born at 33 weeks gestational age. They are two weeks now. They probably won't come home until end of March or early April. We were a bit shocked that both twins had Down's as they are fraternal and we were told its a one in a million chance that both would have it. I had a high risk triple screen during my pregnancy and was treated my a perinatologist

throughout the pregancy. We elected against amnio but had ultrasounds done which never showed any markers. I am still trying to digest the diagnosis and am in the process to get as much information as I can.

March 20, 2007

Welcome and congratulations on the birth of your twins. Wow, that would be quite a shock seeing they are both fraternal. I hope they are doing well and will be with you soon.

I have 4 kids. My first child was a stepson whom I raised and he considers me mom. My first biological child was Mercede and she was born with translocation trisomy 21. Turns out I was a carrier of it and two years after her birth I gave birth to my second daughter with DS. The girls are 14 and 16 now. I also have a 2 1/2 year old who is a carrier like I am.

I feel I have been very blessed to have all my children. Even thought both my middle children have DS, they are NOTHING alike. I think because they both have DS, people assume they would be more alike (I being one of those people) and nothing could be father from the true.

I can't wait to an update on your children.

Gayla, mom to 24, Mercede16 (DS), Ce Ce 14 (DS) and Aysha 2

Hi, I would like to introduce myself. My name is Anja and my dh is Wilvens. We live in the Atlanta area. I am german and my husband is haitian. We just had twin boys on March 2nd. Fabien and Marcel were diagnosed with Trisomy 21 just last week. We have a 3 year old daughter Celine. The boys are still in the NICU as they were born at 33 weeks gestational age. They are two weeks now. They probably won't come home until end of March or early April. We were a bit shocked that both twins had Down's as they are fraternal and we were told its a one in a million chance that both would have it. I had a high risk triple screen during my pregnancy and was treated my a perinatologist throughout the pregancy. We elected against amnio but had ultrasounds done which never showed any markers. I am still trying to digest the diagnosis and am in the process to get as much information as I can.

-- Gayla

March 20, 2007

Welcome Anja and family,

Congratulations of the birth of your twins! You have come to right place. You will find other families just like you.

Our boys turned 7 in February. Davey has DS. His twin brother does not. We also have a 17 year old daughter and a 19 year old daughter. My husband and I also chose not to have an amnio, but found out when I was about 6 1/2 months pregnant when Davey was diagnosed with fluid in his pleural cavity. We are very blessed that Davey is very healthy now.

Please ask lots of questions, I am sure someone will have been through it. There are several families that have more than one child with DS.

I would love to see pictures of your new family when you get a chance. We just got the boys school pictures, so I will try to scan them in and send them in the next couple of days.

We live in Reno, NV.

-- Hello, I am new to this site

Hi, I would like to introduce myself. My name is Anja and my dh is Wilvens. We live in the Atlanta area. I am german and my husband is haitian. We just had twin boys on March 2nd. Fabien and Marcel were diagnosed with Trisomy 21 just last week. We have a 3 year old daughter Celine. The boys are still in the NICU as they were born at 33 weeks gestational age. They are two weeks now. They probably won't come home until end of March or early April. We were a bit shocked that both twins had Down's as they are fraternal and we were told its a one in a million chance that both would have it. I had a high risk triple screen during my pregnancy and was treated my a perinatologist throughout the pregancy. We elected against amnio but had ultrasounds done which never showed any markers. I am still trying to digest the diagnosis and am in the process to get as much information as I can.

March 20, 2007

Well said Sheryl.

I have to say my husband took the diagnosis a lot better than I did for a long time. It takes a lot of time to change your hopes and dreams for your child. I feel our family was chosen for Davey. We are so blessed to have him as a part of our lives. He has changed us all for the better.

-- Hello, I am new to this site

Hi, I would like to introduce myself. My name is Anja and my dh is Wilvens. We live in the Atlanta area. I am german and my husband is haitian. We just had twin boys on March 2nd. Fabien and Marcel were diagnosed with Trisomy 21 just last week. We have a 3 year old daughter Celine. The boys are still in the NICU as they were born at 33 weeks gestational age. They are two weeks now. They probably won't come home until end of March or early April. We were a bit shocked that both twins had Down's as they are fraternal and we were told its a one in a million chance that both would have it. I had a high risk triple screen during my pregnancy and was treated my a perinatologist throughout the pregancy. We elected against amnio but had ultrasounds done which never showed any markers. I am still trying to digest the diagnosis and am in the process to get as much information as I can.

March 21, 2007

Hi Sheryl,

Can you help me understand a little better the " 1% chance of having a

child with DS not being correct " . I'm still confused when it comes to

multiples. I don't think our perinatologist understands this correctly,

which is sad to say. Definitely, our OBGYN sure didn't, course he didn't

know alot of things, other than how to make as much money off of our

insurance as he could. That's another story.

Thanks,

Sheryl Knapp wrote:

> Welcome Anja! I too was treated by a perinatologist for my high-risk

> (triplet) pregnancy, and no markers emerged in any of the level-3

> ultrasounds and other tests I had. My perinatologist told us that,

> based on these findings, my age, etc. we had only a 1% chance of

> having a child with DS which I now know to be incorrect -- yet despite

> my attemts to explain to him how he's misinterpreting the statistics,

> he continues to give patients the incorrect stats. Regardless of what

> I would have done with the information, I feel that it was my (and

> other families') perogative to have correct statistics to base my

> decisions on...

> I know -- we all know -- how hard it is to get over the shock and

> digest the diagnosis, and I remember the months after my daughter was

> born wondering if I'd ever think about anything else... or if I'd ever

> see her as herself as opposed to as a child with DS. But things do

> begin to change, slowly for me but steadily, and you'll find yourself

> thinking and hurting about it less and less. And -- best of all --

> you'll start to see all the unique joy your boys bring and relish all

> their accomplishments. A woman that I know whose baby with DS is now

> approaching a year old emailed me this weekend to say that " she feels

> sorry for families who don't have a child with DS " , adding that her

> daughter (her 4th or 5th child) had transformed the family -- in

> particular, her workaholic doctor husband now takes an active interest

> in the kids, and she is suddenly noticing all the good and generosity

> in the world. My daughter has transformed my own family to the point

> where I can't imagine life without her. I can't say that she's made

> things easier, but she's definitely made my life and experiences far

> richer and more meaningful.

> Sheryl Knapp, mom to Caleb, Ethan & Louisa(Ds), 7 1/2

>

> /--*/ Hello, I am new to this site

> Hi, I would like to introduce myself. My name is Anja and my dh is

> Wilvens. We live in the Atlanta area. I am german and my husband is

> haitian. We just had twin boys on March 2nd. Fabien and Marcel were

> diagnosed with Trisomy 21 just last week. We have a 3 year old

> daughter Celine. The boys are still in the NICU as they were born at

> 33 weeks gestational age. They are two weeks now. They probably won't

> come home until end of March or early April. We were a bit shocked

> that both twins had Down's as they are fraternal and we were told its

> a one in a million chance that both would have it. I had a high risk

> triple screen during my pregnancy and was treated my a perinatologist

> throughout the pregancy. We elected against amnio but had ultrasounds

> done which never showed any markers. I am still trying to digest the

> diagnosis and am in the process to get as much information as I can.

>

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March 21, 2007

Hello Anja,

Welcome to our group, we're really more of a spread out family. I hope you feel you

can ask anything or just vent if that is what you need, most of us have been there too!

We did not know that 1 of our triplets had Ds until a neo-natal nurse leaned over me

in the very crowded delivery room and asked if I had an amnio? I started to hyper-

ventilate and she ran off, hours later when they brought the 3 babies in, they showed

me and w/ big smiles and then looked down when they passed me

Zack like it was too awful to say anything. I was sure they were right and that my life would

consist of nothing but taking care of this baby w/Ds and 3 other children and we would never

be carefree and happy again. Those thoughts stayed w/ me for months, when ever I looked

at Zack or introduced the triplets I felt sick, and guilty for feeling sick! All i saw was a baby w/DS

and all that would mean, it was a very heavy load to bare.

Well they are almost 9 and Zack is the greatest joy in my life, his presence in our family has

changed all of our hearts, we see things so clearly and we take nothing for granted. He is in

a Regular class at the same school as his siblings. Just like someone else said, he hasn't

exactly made our life easier, but easier isn't always better. I love Zack more deeply than I ever

imagined i could love anyone or anything. We are lucky to have someone so great in our family!

Irene

Jake 10

Zachary DS/ADHD, , & 8

Hello, I am new to this site

Hi, I would like to introduce myself. My name is Anja and my dh is Wilvens. We live in the Atlanta area. I am german and my husband is haitian. We just had twin boys on March 2nd. Fabien and Marcel were diagnosed with Trisomy 21 just last week. We have a 3 year old daughter Celine. The boys are still in the NICU as they were born at 33 weeks gestational age. They are two weeks now. They probably won't come home until end of March or early April. We were a bit shocked that both twins had Down's as they are fraternal and we were told its a one in a million chance that both would have it. I had a high risk triple screen during my pregnancy and was treated my a perinatologist throughout the pregancy. We elected against amnio but had ultrasounds done which never showed any markers. I am still trying to digest the diagnosis and am in the process to get as much information as I can.

March 21, 2007

Hi Anja,

Congratulations on the birth of your sons! I too just had twins December 29th, they were born at 28 weeks gestation. We had a LONG stint in the NICU, so we know how stressful that can be! I too had all the tests & 4-D ultasounds and nothing ever came back suspicious. Let us know if you need anything!

~Mom to Caden & (DS) 11 weeks

Hello, I am new to this site

Hi, I would like to introduce myself. My name is Anja and my dh is

Wilvens. We live in the Atlanta area. I am german and my husband is

haitian. We just had twin boys on March 2nd. Fabien and Marcel were

diagnosed with Trisomy 21 just last week. We have a 3 year old

daughter Celine. The boys are still in the NICU as they were born at

33 weeks gestational age. They are two weeks now. They probably won't

come home until end of March or early April. We were a bit shocked

that both twins had Down's as they are fraternal and we were told its

a one in a million chance that both would have it. I had a high risk

triple screen during my pregnancy and was treated my a perinatologist

throughout the pregancy. We elected against amnio but had ultrasounds

done which never showed any markers. I am still trying to digest the

diagnosis and am in the process to get as much information as I can.

March 21, 2007

Hi Anja

Welcome to this group. My name is Ali Whittington. I live in

Auckland, New Zealand ( a small country in the South Pacific) I

have twin boys and who both have T21 and are

fraternal twins. They will be 5 next month and I keep wondering how

we got through the first year intact. They were born at 34 weeks

and were home 5 weeks later, being breast fed and

with a naso-gastic tube to top up bottle feeds. The naso-gastric

went after two weeks. It certainly was a HUGE shock to realise that

one and then other had DS. Because of that the specialists assumed

they were identical. However they did not look at all alike and we

had a zygosity DNA test done to confirm our own thoughts that they

were fraternal. They are a bit of a curiosity in the DS community

here in NZ. There are some sets of twins where one has DS, and one

identical set but I believe our boys are the only fraternal twins in

NZ where both have DS. I tend to be a bit of a lurker on this group

but have found it to be so helpful with all sorts of questions

people ask and experiences they have. So many things relate to our

circumstances even though we are over the other side of the world.

Take care and enjoy your new arrivals.

Ali Whittington Mum to (15), Ben (8), and and

(5 next month, both with DS)

March 22, 2007

Welcome Anja! The other moms have already said, in such beautiful words, the same thoughts that I have, regarding the love and magic that a child with DS brings to the family. I just wanted to say one more thing - don't try to take in too much information too quickly! Trust me - it can get OVERWHELMING!

Above anything else, always remember these precious boys are, simply, your babies. They are not "Down syndrome". You just love, nurture, feed, and cuddle these babies to your heart's content! And know that you will be able to find all the information you need, as the need arises.

You are BLESSED, Anja! You'll see : )

, happy happy mom to 3.5 year old twins, Warren (DS) and Sam

Houston, TX

NOTE: While they are still in the hospital, if this hasn't already been done, please ask your doctor to do an echo cardiogram on their hearts. Heart defects are VERY common in our kids. Warren's heart issues were detected prenatally, monitored postnatally, and repaired beautifully at 5 months of age.

From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of cfs_storeSent: Monday, March 19, 2007 12:17 PMTo: Multiples-DS Subject: Hello, I am new to this site

Hi, I would like to introduce myself. My name is Anja and my dh is Wilvens. We live in the Atlanta area. I am german and my husband is haitian. We just had twin boys on March 2nd. Fabien and Marcel were diagnosed with Trisomy 21 just last week. We have a 3 year old daughter Celine. The boys are still in the NICU as they were born at 33 weeks gestational age. They are two weeks now. They probably won't come home until end of March or early April. We were a bit shocked that both twins had Down's as they are fraternal and we were told its a one in a million chance that both would have it. I had a high risk triple screen during my pregnancy and was treated my a perinatologist throughout the pregancy. We elected against amnio but had ultrasounds done which never showed any markers. I am still trying to digest the diagnosis and am in the process to get as much information as I can.

March 26, 2007

Hi Anja,

Congratulations on the birth of your boys. I live in ton, SC, not that

far from Atlanta, and I also have twin boys who have DS. They were

born at 32 weeks on Feb 18th, 2003. They just turned four and we can't

believe it. Time goes by too quickly. One was in the hospital for 10 days at birth,

and the other 16 days. We also didn't find out that they had DS until after their birth.

This ended up being a tremendous blessing, as I was very sick and on bed rest and would have

worried about the future, which wouldn't have been helpful for any of us.

The news that they had DS was devastating. I didn't know anyone personally that

had DS or a child with DS. I couldn't imagine a wonderful future for our family, but I

was so wrong. These boys are amazing and the joys of our lives. They are so full

of life and love that you can't help but smile when you see them.

The first year took alot of work and adjusting, but that would be the same for all twins.

We don't have any family within a thousand miles but we are managing just fine. My

Mom was able to live with us and help for 7 weeks after their birth. This was a crazy time

between pumping, trying to teach two premature babies to nurse, and keeping them fed and

growing. I could see that I couldn't keep all that up for long, so I ended up pumping and

giving the boys breast milk by a bottle. This ended up being a great decision, since everyone

could them help me feed the boys.

Don't pass up any help that is offered by your friends and enjoy your boys. Feel free to e-mail

me off list if you want. Don't worry about the future. In time you will see how blessed you are.

God only gives these angels to special parents.

a,

Mom to and