DownSyn Forum

mick&tricia · Posted: November 01 2008, 11:14 AM Post subject: what to expect

Hi everyone,
we have just been told that our 2nd baby who is due in May09 will have downs. We are in a state of shock,bewilderment & guilt as to why us.
Can anyone advise us what too expect regarding medical issues ect we might encounter.
We also have a 15 month old son and are worried how the new family
member will affect him, not just now but in later life will it make him
grow up too quickly, will he loss special time with mom or dad
because his brother/sister need us a lot more.
sorry if this seems like rambelling but i have never asked a question on a forum before
your answers to our questions are appreciated
Thanks
Mick & Tricia

teddyjoe · Posted: November 01 2008, 11:44 AM Post subject:

I know that it is a shock but I can assure you that you've been blessed. Our little Teddy has been the best thing to happen to our family and he is the light of our lives. He's perfect. He has 2 older brothers and 1 sister who love him so much.

I was terrified of the idea of raising a child with Down syndrome and now I'm so happy and honored that I am. I never knew what I was missing out on before!

As far as the medical issues go, we have been very fortunate that he hasn't had any. I'm not exactly sure of the exact rate but it is quite common for babies with Down syndrome to have some sort of heart defect, which I'm sure will be checked and monitered.

We have thyroid testing done every six months along with vision and hearing screening.

Congratulations on your little angel. Teddy was born in May also, that's a great time of the year for a birth!

_________________
Jennifer
Teddy Joe's very proud mommy.

Vanessa · Posted: November 01 2008, 11:53 AM Post subject:

Well I tried to reply to you but it was so long it kicked me out! Ahhh! looks like I shouldn't try to say so much!

I know exactly how you feel and I am sorry you are in that stage right now where everything feels lost. You are probably in a state of morning over the loss of the baby you thought you were going to have. When I was feeling sad that was the best way to describe what I was going through. Scared, sad and just uncertain about what your life is going to be like.

There are a few things, health wise, that are more common in children with DS but it doesn't necissarily mean your child will have any of them. There are good books, info packages and websites out there that will tell you all about them. I don't want to say much incase I'm wrong or upset you in any way.

Our daughter did have a heart defect, one of the things that are more common in kids with DS. She since has had open heart surgery to have it repaired and she is 100%!

Ava is our first and I can't help you with the sibling part but if you have any questions for a fairly new mom to try to answer don't be afraid to ask! I would love to help you and share my experiences with you to try and ease you through this stage. You will make it past that scared, sad stage and find you are truly blessed.

Take care

_________________

Ava's Mommy - 02.26.08 - My Living Angel

QuinnsMom · Posted: November 01 2008, 12:01 PM Post subject:

Congrats on your little one and welcome to downsyn.

We had a prenatal dx with our daughter Quinn at 18 weeks. We had a lot of follow-up care through the remainder of the pregnancy - regular visits/ultrasounds with the perinatologist, a fetal echocardiogram (which was repeated when Quinn was born), and non-stress tests and biophysical profiles. In every single one of these things, everything was totally fine. Quinn does not have any heart issues, any feeding difficulties, any health problems. We have been truly blessed. I think this is very important for you to know that DS does not necessarily equal health problems. She is in therapy three to four times a week, which we just decided to do privately because of the poor services in our area - but my husband is a stay at home dad and he takes her to that and it has worked out well. We have two other sons, ages almost 8 and 4, and they haven't been neglected in terms of attention - in fact, they benefit so much from having Quinn in their life. They are more sensitive to individual differences, my oldest was just talking to me about this today as a matter of fact about how blessed he is to have a sister who just so happens to have DS.

I know it can be rough having a prenatal dx - there is just so many unknowns. I would just recommend getting great follow-up care from your doctors so they can monitor if there are any significant heart/stomach/bowel issues. Then just take the time to meet families who have a little one with DS. They will make you feel so much better when you see how typical their lives are. Plus read the book Gifts - it is awesome. Also just know from my experience that it isn't as scary as it seems. I have become a better person and my life is so much better since I have had my daughter. Feel free to PM me if you have any questions about the prenatal stuff.

_________________
Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

KirasMom · Posted: November 01 2008, 12:04 PM Post subject:

Congratulations on the forthcoming addition to your family!! How exciting! I know you have many questions, worries, and much confusion. First thing to do is take a deep breath and slow down. Take it a bit at a time. I'll try to answer some of your questions from my point of view; but I'm sure others will join in.
As far as medical issues: it's possible there won't be any; however, that said, many children with DS have heart defects, which are usually treated with medication or surgery. Many also have an atresia of the bowel, but, again, this is easily corrected with surgery. There is an increased liklihood of low thyroid hormone levels.....fixed with medication. And several have what is called Atlanto-Axial Instability, which is a weakness of the first two bones in the spine, right under the skull. There are other things, but to a much more minor degree. I HIGHLY recommend the book, "Babies With Down Syndrome" by Karen Stray Gundersen. It is the quintessential book for new parents. Also read through this site and others, and look for a support group near your home. All are valuable sources of information and support.
As to your older child, your new baby will have nothing but positive effects on him. Siblings, older or younger, learn patience, tolerance, loving, and forgiveness by being in a family with a disabled child. They are much better people for the experience. How much more time you need to spend with the new baby won't be known until he/she is born; but there's always time to spend with the older one. There will, of course, be the usual sibling issues/rivalry; but I firmly believe that siblings of children with DS are much better people than they would have been, had they not had that experience.
I also firmly believe that we should treat our children with DS as normally as possible. Don't make a big deal of it if it doesn't need to be. Your new baby will learn, just at a slower rate than "standard" children. Depending on what medical issues he/she has, you may not need to spend a lot of time at doctors' offices. You'll likely be involved with physical, occupational, and speech therapies, as time goes on.
I hope I haven't upset you with any of this.
I want to congratulate you again, first for your new baby, and secondly for being chosen by God to care for one of His most special angels on Earth. You'll do great!

_________________
Jane, wife of Jon, mother of two adult sons and of Kira, age 21 (DS)~~~~All are precious in His sight.

Googsmom · Posted: November 01 2008, 12:11 PM Post subject:

You have been Blessed!!! Take it one day at a time. Not everything you read will happen to your child. That said, my little Brooker was on life support for three days b/c of breathing issues. Now she is 2 1/2 yrs old. Has NO medical problems and is smart as a whip. You will see, everything will be fine!!! And as for your other kids, they will LOVE the new addition so very much. You all will be better b/c of a little extra chromosome Very Happy

_________________
Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

Annieo · Posted: November 01 2008, 12:40 PM Post subject:

Welcome to downsyn. I'm glad you found us.

You'll read and hear plenty about the health issues that often come with a diagnosis of Down syndrome so I'm not going to talk about that. What I want to tell you about is the little miracle you're about to bring into the world. Congratulations!!! You're going to have a baby!!! A baby who will be far more like other babies than unalike. A baby who will grow and smile and giggle and walk and talk and steal your heart. It's normal to mourn the loss of the baby you thought you were having. As a matter of fact, almost anything you're feeling right now is normal. It will get easier when you have that baby in your arms.

We just had a speaker at our parent group meeting who addressed the issue of siblings. Research shows that siblings view having a brother or sister with DS as a positive thing. My son with DS has taught his siblings compassion in a way I never could have. My strong, athletic, cool ten year old is the most tender, caring kid in the world when it comes to his little brother with DS. It makes this momma's heart melt.

There's a great book called "Gifts" with essays written by moms of kids with DS. It's full of honest, sometimes heart wrenching accounts of moms coming to terms with and embracing the diagnosis. If you can't find a copy PM me and I can send you one.

I can't wait to hear all about your little one once he or she is born! And again, congratulations!!!

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

violettesmom · Posted: November 01 2008, 12:44 PM Post subject:

http://www.onetruemedia.com/shared?p=74622312df4b12b4b01be4&skin_id=601&utm_source=otm&utm_medium=text_url

http://www.brightcove.tv/title.jsp?title=1285265709

I'll post more later, but CONGRATULATIONS!

_________________

earlyam · Posted: November 01 2008, 6:39 PM Post subject:

Hi and welcome Very Happy

My little boy Ethan is 10 months old now and we were given a diagnosis of DS after he was born. I know you feel your in a overwhelming and somtimes scary place right now but all these emotions are totally normal, it's like you go through a form of grieving, the shock, the anger, guilt etc, but don't feel bad for feeling this way. For me it was the fear of the unknown, not being in control. But having Ethan has taught me to see life in a new and better way.

I have an older daughter who had just turned 4 when Ethan was born and I can honestly say the only issues we've had were the usual insecurities and jealousy that occurs when a new sibling arrives on the scene. I think you always worry about spending quality time with each of your children, but even with Ethan's therapies and the odd dr's appointment I don't feel I spend any less time with her ( most are done during school hours ). For Georgia Ethan having DS is of very little importance, she just see's him as her baby brother.

You'll find a lot of amazing support and advice on this forum.

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

jaybirdnwa · Posted: November 02 2008, 1:25 PM Post subject: Welcome

Mick and Tricia,

Welcome to the forum and congratulations on your expected baby. I am Jay, father to a 3 month old son who has Ds. He is our 5 th child and we also were thrown into a state of shock when we first discovered his diagnosis. But we have adjusted and so has our other children. As you look around the forum here, you will see that every child with Ds shows different strengths and weaknesses of Ds. One thing that you can count on though is that they are very happy kids. Our son is the most smiley baby that we have seen which makes it fun and just melts the heart. People often comment to us about his ability to smile and coo at you even when something is bothering him. Your baby will be a delight to all that come in contact with him. Just need to have an open heart and open mind.

_________________
Jay
Husband to Joy & father to 4 boys/1 girl (ages 6-13)
our youngest is John ('08-Ds)
Blog:http://jaybirdnwa.blogspot.com
Email: jmhilljr@cox.net

happymom · Posted: November 02 2008, 11:28 PM Post subject:

Hi. I think we all know the feelings you are experiencing so you are in the right place. When our son was born 3.5 years ago, my firsts thoughts were "I can't do this". My other kids were totaly fine with it. I didn't have a toddler, but my kids all felt that a baby is a baby. I take him to many activities & therapies but try not to let it interfere with my other children. I dropped one therapy recently when my 10 year old was upset that I wasn't home when he came home. Just as with any additional child you will still find special time with your older one. Keep in touch

Asa's Momma · Posted: November 03 2008, 9:48 AM Post subject: It will be Okay

HI Mick and Tricia,

Everything will be okay, those were very important words for me when we first found out our little guy is DS. I recommend reading on the Downsyn Homepage the Stories, Poetry and Music category. This is my favorite.

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

I have this hanging in front of me at my desk. When we first found out Asa's diagnosis, the first thing my father said to me was, "Don't you give up on him"... OMG I burst into tears and said, Dad, of course we would never give up on him!

I can't tell you how lucky we are, he is so magical, and he embraces and emotionally touches everyone he meets. Every single time we go in a store he's waiving and smiling at everyone and you can tell to each of those people it might of just been the best part of their day!

You guys will have lots of moments of why us, and as everyone says, it does get easier. It's the initial climb up the mountain, but once you get to the top - man the view will steal your heart and take your breath away....

_________________

[/url]
"Life is What You Make it..."
www.henryfamily-lifeiswhatumakeit.blogspot.com

Jackie, Brian, Asa and Gracyn

JanetG · Posted: November 03 2008, 9:55 AM Post subject:

Welcome and congratulations on your little one. We, also, received a prenatal diagnosis and worried about what the future would hold. By the time the baby arrived, and with my doctor telling me enough times that she would be a baby first, Jacey arrived and immediately won our hearts. Fortunately, she has not encountered any health problems, and your little one may or may not either. You just have to take one day at a time and not dwell on the things you can't control. I know, easier said than done. I still get teary and emotional, but love my baby girl more than life itself, and you will too - just give yourself some time to adjust to it all. You are about to embark on a new and wonderful journey. Feel free to PM me at any time...

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

cassangel · Posted: November 03 2008, 12:14 PM Post subject:

Welcome and congrats Smile

I am still new here too and really appreciate this forum Smile

My son is 2 weeks old and we found out he had DS at his birth. I have a 6 year old daughter and a 20 month old daughter at home. I do my best to make sure all my babies get my attention. I can understand your concerns regarding your other child for I had the same concerns when I was pregnant and did not even know I was carrying a baby with DS; I did not want Gaby my 20-month old to feel nelected as I was so close to her.

I live one day at a time, sometimes one moment at a time and that has been working for me. I was so sad and shocked, and depressed but now I am slowly getting better and things are looking up and positive. It is a hard diagnoses to take at first and I do not know what the future holds but when I hold my newborn son I just love him so very much and that is what I focus on; he is my sweet little baby boy, DS or not Smile

Hang in there and know we are here for you Smile

(((((hugs))))))

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"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." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

Dylans_Mom · Posted: November 04 2008, 3:07 PM Post subject:

Congrats on your up coming addition. Like any family with more then 1 child you need to be aware of how much time you spend with each. Dylan's older sister is great with him. When he was younger and receiving therapy at home, the therapist would include her in their session to make her feel part of everything.

Don't worry about everything you read regarding health problems. Dylan probably has had less health problems then his older sister who does not have DS.

_________________
Sandy (Dylans_Mom)
Mom to Hailey 3/2002, Dylan (ds) 12/2005

dharmatia · Posted: November 28 2008, 10:30 AM Post subject:

Sorry I'm a bit late with my reply, but I wanted to welcome you to the site. Downsyn.com helped heal my heart. My Callie is 4.5 months old now and is absolutely perfect. We found out after she was born that she had DS. I was so terribly angry. I found this site, though and it helped. I have to admit how frustrated I was to keep reading about how much of a blessing it is to have a child with DS. I thought, "Yeah, right. You just HAVE to say that because your stuck now" I wanted to know that it was OK to be so dissappointed and oh, so angry. I found out that was just part of the grieving process.....it DOES go away. You will find that you ask yourself "Why me?" only 4 times a day.....then only 1 time a day.....then only every other day.....then one day you'll look at your little baby and think "How did I get so damned lucky?" Smile

Callie has made our family just as happy (if not more so) than a baby without DS could have. She's adorable, healthy and the sweetest little peanut around.

I read "Roadmap to Holland" (there's a link for it at the top of the site). I REALLY enjoyed that book. It gave an honest approach to some of the emotions you'll encounter on your way. It helped me to read something that wasn't so 'sunny', but more real. It may help you. Good luck on your journey. This is a wonderful site to use as a sounding board. It's ok to share your emotions even it they aren't "PC". We get it, and we'll help you through it.

_________________
Tia
Wife to my AMAZING husband, Clint (10-22-05)
Mom to Dharma (7-26-05) and Callie (7-11-08 DS)

torusmum · Posted: November 28 2008, 7:57 PM Post subject:

Hello and welcome!

My Toru hasn't had any serious medical problems so far.
When he was diagnosed with DS, one of the many worries I had was, "What does this mean to Kai?
You know what? I don't worry about that any more.
Kai and Toru, they are great together. Kai is so good with Toru. When he talks to him, he signs and sometimes, we wants to do flash cards with Toru too.
And, I never asked him to do it.
Don't think about the future so much. I live day by day and I really enjoy it.
Sometimes, I ask myself, "why the heck didn't I live like this before???"

Hope to see you around.

Jin

_________________
A singing mother of Kai and Toru

Me-Shell · Posted: November 28 2008, 11:26 PM Post subject:

Welcome to one of the best places to be! Everyone on this board has so much to offer. Like Karyn and Janet, we got our DX prenatally with our son Cameron. He will be 10 months old next week, he has two older siblings. Shane is 20 and Aubrey is 17. They absolutely adore him.
After the dx we had two echo cardiograms prenatally and two after he was born. He will have another in a few weeks and then I think we are done with them. I had an ultrasound once a month until my 7 month and then they progressed to every two weeks and then once a week until he was born. Cameron has no heart or feeding issues. We did an audio brain reading to check his hearing a few months back and it came out good but have to have him tested again at a year.
Although our little blessings tend to have more health issues, it doesn't mean they will actually have them. It differs by each child.

Cameron has changed our lives. Each day that he has been with us has been blessed with his love and spirit.

Again, welcome.

_________________

Michelle, Fiance to Wyatt, Mom to Shane (22), Aubrey (19) and Baby Cameron DS (02/06/08 )

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." After all today is the tomorrow you worried about yesterday.

lilyzmom · Posted: December 09 2008, 1:26 PM Post subject:

I know the feeling when"they" tell you something is wrong with your baby. It's the worst feeling in the world. We didn't find out until Lily was born and it was(what we thought then) the worst day of our lives. But now 15 months later, Lily is the best thing that has ever happened to me and she makes me sooooo happy.
Honestly ,you might face some health problems and you might not. Lily had OHS at 3 months but recovered just fine and has been totally healthy and happy ever since.
It's hard to say exactly what to expect, but one thing is certain. You will love this child like you didn't think would be possible. You may even embrace his differences. I have! He will also surprise you so much. He will also show you soooo much love. These are just my experiences.
I don't know about siblings...yet. Lily's sister is 13 months younger but I look forward to them learning from eachother and playing and loving eachother.
I think your baby with DS will teach your other child many many great things.Many parents on here with other kids will probably tell you that too.
CONGRATULATIONS!!You're in for a treat!!!!!!I promise!

_________________

Aidansmom25 · Posted: December 15 2008, 10:43 AM Post subject:

I went through that stage and wondering about the future and how it would affect my oldest. It hurt to think that I wouldn't have two typical children. We didn't find out until the day before he was born. I ended up with excess amniotic fluid so they did an ultrasound and saw he had fluid around his lungs so to a specialist we went. It was very hard and I'll admit I cried even as I rejoiced it wasn't something more serious. Once you get the time to bond with your child things will change and you will see the joy that a DS child can bring to your life. I know Aidan loves his little brother and at 4 years old he doesn't see anything different in him and everyone loves Kyler. He's fawned over at stores and by pretty much everyone he meets. His smile just lights up his whole face and who could resist him Smile

The most common medical issue with children with DS is heart defects and a pediatric cardiologist should be following your pregnancy. Kyler had a mild ASD which closed by 6 months old. This is a wonderful site with many helpful people if you just need to vent, need suggestions, or just want to brag on your little one's newest accomplishment.

_________________
Melissa mom to Aidan (9-2-04) and Kyler (3-8-07, DS)

My girl Sam · Posted: December 18 2008, 9:47 PM Post subject:

Hi, I'm kind of late to this thread as I don't post too often on this section but I wanted to add to all the great responses you've gotten. What really got me was how you were worried about your other child and how the new baby may affect him. We have 4 kids and my 3 boys adore their sister. I've already seen the benefits of having a sibling with special needs. My 5 yr old goes out of his way to play with other kids with special needs. He's not 'afraid' of people who are different. When people worry about siblings I always think of Brian Skotko and all the great work he's doing. Obviously his sister has had a wonderful influence on him. Here's a link to his resume

http://www.brianskotko.com/images/stories/resumebrianskotkowebpage.pdf

www.brianskotko.com

_________________
Angie - Mom to
Samantha 9yrs (DS)
Gerry 7yrs
Abera 7yrs
Brandon 5yrs

sarahuk2 · Posted: December 31 2008, 5:31 AM Post subject:

Another late reply here but I just wanted to reply as my middle son was only 19 months when Immy came along and I was worried too about whether he would miss out at all - he didn't at all and in fact we probably overcompensated the other way! Immy was such an easy baby in many ways that she just joined in our lives and all the toddler groups carried on as before with her.

Now they are 7 and 5 years old and still get on really well. THey both go to school together and Immy is quite a celebrity which Tom quite enjoys. He certainly enjoys all her attainments and the fact that everyone knows her.

She is very healthy which is fortunate - probably more so than her brothers actually as she rarely even gets a cold. She is a strong personality too and having 2 big brothers can be quite lively! We are thinking special olympics when she is older as she is a fast runner with bags of energy.

She is also the person in our family who can always put a smile on our faces when we are sad as she is just the sweetest and most charming little girl.

So, congratulations on your baby - try not to panic - take each day at a time and look forward to meeting them!

Sarah

_________________

Mum to Charlie, almost 14, Tom 8 and Imogen, almost 7!(ds)