23 weeks pregnant and our baby has Down Syndrome -- need support/advice, please

[foolishpony]

I would so appreciate anything you wish to say or tell me. I am feeling very overwhelmed and frightened about the future. I am not trying to complain, but my situation is this: I am 40 and this was a surprise pregnancy (my fault). I stay at home with DD, 5 and DS, 2 1/2. I began watching an infant 2 days ago to bring in some money as we are struggling financially. My husband is a college coach and has an erratic schedule, long work hours (when he is home he is recruiting or working), and coaches in a different city in the summer (he sometimes can come home for a day at the weekend). I often feel like a single parent! I had hoped to home school -- my daughter is not enrolled in public K.

From what the doctors can tell, the baby's heart looks ok so far, but there is fluid on the brain. They are calling it ventriculomegaly at this point. Also, all the long bones are measuring about 3 weeks behind, so far. I realize there is no way of knowing how severe the Down Syndrome is.

I have been researching on line and I've seen Kelle Hampton's website. In my current mental state, I am alternating between feeling able to handle this and not being able to handle it all.

Thank you for reading and for sharing your experiences.

[EarthRootsStarSoul]

Last year my son's 4K class had a young woman with Down's as a classroom helper.  She was very competent at her job and she enjoyed it too.  I'm sorry I don't have any more advice or experience with Down's. 

[Linda on the move]

  My thoughts are with you. I don't have any experience with what you are going through. We didn't find our our DD has special needs until she was a toddler. I have had many days when I didn't think I could cope, but some how they passed. I've also had days when I have felt very blessed for ALL the experiences I've had.

For me, part of the path of being the parent of a SN child has been making peace with the unknown. My DD is now 15 and has had multiple evaluations, and yet there are still things that we do not know. I cannot imagine the intensity for you right now, exactly how big the things are that aren't known, only that *for me* learning to breathe while still not knowing has just been part of this.

[rnra]

Please visit http://noahsdad.com/ especially http://noahsdad.com/new-parent-guide/

Good luck!  

[cassyinjax]

Hello! 

I was in your shoes recently.  I got the nuchal translucency screening done, and it came back positive.  After getting a higher level ultrasound done, my husband and I decided to get an amnio.  He's in the Marine Corps, and unfortunately had to deploy right after we made that decision, so I got the amnio done (and gave birth, for that matter) without him.  I got the results back in about three days, and it was positive for Down syndrome.  

First, let yourself feel whatever you're feeling and don't feel guilty.  I was an emotional wreck.  I cried pretty much nonstop for about three days, and the next few weeks were a lot of ups and downs.  I felt extremely overwhelmed, because this is our second baby -- our older son is only 14 months older than our younger.  But after those few weeks, I finally got it together.  One of the things that helped me feel a LOT better was the Welcome To Holland essay:

http://www.our-kids.org/Archives/Holland.html

It made me realize that although everything had changed, it was going to be OK.  First, realize that things are so drastically different for children with Down syndrome now than they were twenty years ago.  What you're picturing is honestly probably nothing like what your child's life will be like.  I've come to realize that thanks to advancements in medicine, early intervention, and therapy, there are virtually no limits on what EITHER of my sons can accomplish.  Plus, you will find there is an amazing network of support groups to help you both now and when you have the baby.  Is there a local Down syndrome group in your area?  I'd start there.  Also, my son's arm and leg bones were shorter.  It's normal, don't stress.

Just hang in there for now, and know that it WILL be ok.  Our son with Down syndrome was born five weeks ago and he's no different than our older son was as an infant.  Breathe, relax.  I promise, everything will be fine.  I worried about a lot of stupid stuff, too -- even stuff like, will he look anything like us because he has Down syndrome?  LOL.  (He's the spitting image of his brother -- they could practically be twins at that age.)  Whatever you're feeling, it's ok to feel it.  And trust me, it is also WAY better in my opinion that you found out now.  By the time you have the baby, you'll have (hopefully) come to terms with the diagnosis and just enjoy your beautiful baby!

[BeautyforAshes]

We didn't find out about our daughter's Down Syndrome and heart condition until she was born, so needless to say it was quite a shock.  All of the feelings you are having are completely normal.  I would highly recommend visiting downsyn.com, which is a great great forum for information and support for parents of children with Down Syndrome.  It has helped me so much over the past 3 yrs.  I only wish I had found it sooner.  Also, feel free to send me a message if there is anything else I can help with.
 

[b-rock]

I have not been in your shoes as a parent, but in my profession I have worked with many children and babies who have Down syndrome to varying degrees. Although caring for a child with Down syndrome carries it's own special set of challenges, which are different for each individual, I can tell you that without fail the children and babies I have had the pleasure of working with were among the sweetest, most loving children ever. They are absolutely my favorites! But the contact I have with them is very different than that of a mother raising her child. I encourage you to do as much research as you can, knowledge is power! Best of luck to you.

[JessSpiz]

Hello fellow 40 year-old friend :)

I am mom to a 12 year-old daughter with Down syndrome, Sophia, and I have another daughter who is 14. I could tell you that Sophia is amazing (she is) and that I have wonderful life (I do) and that she has transformed our life for the better in immeasurable ways (she has), and that she is my life's greatest blessing.......but that is the LAST thing I wanted to hear when she was first born because I was sad, depressed, in shock, overwhelmed, and scared. I couldn't even say the words Down syndrome without sobbing. What I can tell you is that time period after diagnosis is truly just a fleeting memory and sometimes I am mad that the diagnosis robbed me of what should have been a wonderful time in my life. It sounds like you are doing some research and have seen Kelle Hampton's blog and maybe Noah's Dad's blog. It probably seems impossible to imagine that you may one day feel like they do. I am going to go out on a limb here and tell you that you will. My world became so much bigger once I had Sophia. I encourage you to visit www.gigisplayhouse.org and www.ndss.org. Also, please check out http://www.idscforlife.org/ and just have fun looking at the photos.

And I would really avoid reading too much of the negative stuff online- a lot of the info is outdated and scary unless it comes from www.ndss.org or one of the other sites that has current info about people living with Down syndrome. Go easy on yourself and let yourself feel all the things you're feeling. It's OK! 

If you'd like my personal email or blog, please feel free to reach out. There is tons of support out there including getting parent mentors from your local DS group. It looks lie you might live in PA?? If so, I just found these places that might be near you?? http://www.ndss.org/Affiliates/Locate-an-Affiliate/Pennsylvania/

Jessica

[amamato9]

Congratulations! I know you do not feel like it now, but I can guarantee that a year from now you will realize that this is the greatest gift you have ever been given. I am the mother of an 18 mo old with Ds.  I am not going to lie to you...it will be difficult getting from where you are now to the happiness that this child will bring to you and everyone they meet...but you will get there.  Studies show that almost 100% of parents of children with Ds are happy with their lives...and more importantly almost all people with Ds are happy with how they look and what their lives are like!  What other demographic can say that? There is less divorce for parents of a child with Ds, etc etc.  Check out Brian Skotko's study online.  This is truly a gift!  You are going to be welcomed into an amazing community you never knew existed. The love and support and new friendships you will gain will astound you.  You are not in this alone.  Now to blow your mind...Ds is treatable.  There is no cure but with vitamin supplements and the correct interventions you can avoid or treat the symptoms of Ds.  I would like to encourage you to join the einstein syndrome list (http://einstein-syndrome.com/join/) to learn about "mothering-type" mothers who are treating Ds biomedically.  There is also an einstein syndrome group on baby center - you might want to join that too.  Targeted nutritional intervention has been amazing for my daughter.  She is meeting all of her milestones on time and is very healthy and bright.  She's only been sick once in her life - ONCE!    There are several good resources to learn about TNI: lleichtman.org, [e-mail], downsyndromeoptions.org, nutrivene.com_educational_information.php as a start.  Nutrivene is a supplement that can be started while you are pregnant. There is so much I wish I could tell you, but you will learn as you go.  You do have what it takes to handle this. Please do not hesitate to contact me.  If you are on facebook there  are 2 groups of moms, including those who are pregnant with a child who has Ds who would love to welcome you.  There are daily posts about our lives and our kids and tons of pics that will show you how amazing our lives are...and will answer any questions you may have. There is also a Down Syndrome pregnancy group on Babycenter.  There are literally 100+ blogging moms of children with Ds to show you what life might be like. Again, congratulations and welcome!  Please contact me privately so I can answer any questions you may have and get you connected with the Ds community.  Welcome!

[momgonz]

First of all, congratulations on your pregnancy and your sweet baby.  Babies are always a blessing.  I have been in your exact shoes... I could have written your note...my husband too was a college coach.  After many years of trying to have a third child, I turned 40 and we quit "trying" figuring God intended us to have 2.  At 42, I unexpectedly found myself pregnant.  Halfway through that pregnancy, I found out that my baby would be born with DS.  I was terrified.  Always having been a reader, I started reading and researching everything I could find.  By the way, they also thought she had fluid on her brain and watched her closely for hydrocephaly.  It never amounted to anything.  They thought they might see a spot on her heart, but couldn't tell.  My sweet girl was born 6 weeks early (she stopped growing during the last trimester so they delivered her early) in July 2005.  She was perfectly healthy, and only spent 12 days in the hospital until she learned to suck so that she could eat without being tube fed. Your child will inspire you to do things you never thought you could do, to see the world in a way you never would have looked at it, and to love in a way you never thought you could.  Go through your "mourning period" now... that way, when you hold your baby in your arms, all you feel will be joy.  There are few families with DS children that don't say what a positive change their DS child has brought into their families.  Teach your child to sign the baby signs and he/she will tell you each morning that the birds are singing... and you will stop to take the time to listen.  When you walk past the homeless on the street, he/she will tell you that they need a hug and you'll wonder why we feel the urge to cross to the other side.  Each morning my girls wakes up with a smile on her face... if she doesn't, we know she is sick.  She makes my husband and I smile each day.  My  older girls are in college now and I told my husband, "do you realize that we will laugh every day for the rest of our lives?"  Our girl does that for us with her sweet ways and funny mannerisms.  She brings and unimaginable joy to our lives... a bond that we couldn't even begin to imagine.  We were chosen by God to raise this beautiful child and I always call her the blessing I never knew to pray for!  Love your child with all your heart and you will be rewarded over and over again!  

[Pretty Colours]

Hi,

I just found your comment by accident during an internet search on DS. I have an 8 month old son with DS and wanted to encourage you.  I wrote you a long blurb, and when I tried to submit it disappeared because I hadn't done something right.  This is a first for me! 

The main message I wanted to say was, I feel your pain, although I have almost forgotten what it was like. Let me tell you the overwhelming question when Jesse was  born was...What was all the fuss about?  It just didn't matter at all.   There is no, disappointment, no feeling of second best, no regrets, nothing.  Actually everything opposite. He just brings us such complete and utter joy, and we would never have it any other way.  I heard an article about screening the other day and though, Oh I would never want to screen him out, I don't want any other baby! In fact we often forget that he has DS.

During pregnancy though, it was a very different story.  Especially close to the diagnosis time.  It was a miracle conception, not meant to be able to have kids (my husband has 2 boys) so I'm a step mum to a 15 year old and 22 year old.  The miracle quickly turned to what felt like a slap in the face after an amnio (complete disbelief), and we had all the fears and questions I'm sure you have.  He was also diagnoses with a large AVSD (hole in the heart) so things seemed to go from bad to worse.  Actually to be really honest they though at first it may be inoperable or 'incompatable with life', and secretly that felt like an honourable way out.

The doctors assumed and almost pushed us to abort like 97% of other women in my city do, but my faith didn't allow this so I felt I was trapping my husband with this burden and felt trapped myself.  He wasn't opposed to a termination, but supported me completely.  Later in the pregnancy mostly I just enjoyed it, but there were still bad days and unexpected tears.  God did bless us with heaps of unexpected support.

Now my husband is crazy about this kid, and they are inseparable.  If he cries, it is often Dad who is the only one who can settle him...it's like a special gift.  

I am just like any other Mum, have a great mum's group, and other wonderful people in my life that have eventuated since bub arrived.  He has also added a dimention to our family that I can't explain.  My husband and I are both sporty and kind of healthy people who never imagined being touched by something like this, but we are both so much closer, and have been humbled and changed and love life more. We take less for granted. So much good has come out of this.  When I was pregnant I rejected everything DS.  It's only now I am starting to even look up services etc.  Every new face he pulls, new milestone, like rolling over brings us such joy.  He only has to reach his own potential to have a great life, and we will do whatever we can to to help him.

I was talking to a friend the other day and mentioned our experience.  He said, Did you know I had a son who was DS, and he died of Lukemia at age 6?.  Wow I was floored.  I just felt my heart crush for him.  This baby, that I didn't know if I even wanted, I would move heaven and earth and give my life to keep now. And so would my friend for his son.  

You will have so much love and support to through the community, as well I am sure.  If you have any questions, or there is anything else I can do to encourage you, let me know. 

 

[hsmomforlife]

Congratulations! 

If you haven't contacted any of the local organizations which serve people with Down syndrome and their families in PA, I would encourage you to do so.  They might be able to connect you with another mom who also has had a prenatal diagnosis in your area.

I'm not sure what part of PA you are in, but here are a few that I found:

http://www.epdsc.org/

yadsa.org/

 http://cpadsag.org/

 

· www.thearcnepa.org/pods.html

 

· www.epdsc.net/how-you-can-help

 

· www.dsapgh.org

 

· www.dsav.org/media.html   Not sure exactly what I did that made these come out this way, but I hope it helps!

[jondee0]

Congratulations on your baby !  I can only imagine what you're feeling right now. My son has Down syndrome, but his was a postpartum diagnosis, so I didn't have the experience of dealing with the shock, grief, and fear that the diagnosis can bring, without my baby in my arms. I can only imagine how difficult it must be.

But there are so, so many moms who have been in your situation. There are a couple of resources I would recommend to you, in addition to what's already been shared. First, this website: http://downsyndromepregnancy.org/ . Next, the Babycenter bulletin board linked on that site (Down Syndrome Pregnancy; there is also a great Down syndrome board on Babycenter). These will help you hook up with other women who either currently are, or who have been, in your shoes. 

We got my son's probable diagnosis when he was just a day old and awaiting surgery to correct a gastrointestinal defect. It was confirmed when he was a few days old. While getting this news was certainly tempered by the fact that I'd already fallen head-over-heels over this little guy who looked like his siblings, was warm and cuddly, and smelled gloriously like a newborn, it was still a shock to hear. His whole first year was pretty rocky for me, as I realized that I had some very, very negative ideas about developmental disabilities that I had to address and conquer. But it really wasn't that long before the day came when I realized that I'd spent the whole day without once thinking of Down syndrome (at first, it simply consumed my thoughts, day and night). Life settled into its own new normalcy, and much of life really wasn't that different from before Gabe was born. I still homeschooled the other kids, ran the house, did my gardening and exercised, attended and led La La Leche League meetings.

I think you'll be pleasantly surprised at how positive you'll find the parents of kids with Down syndrome. For most of us, there has definitely been a mourning period at first, as we've let go of the dreams we'd had and began to plan new dreams. But as we've grown with our babies, we've realized that there is a wealth of blessings---for the entire family---that accompanies a baby with Down syndrome. Hugs to you on your journey...

Joni and kids, incl. Gabe, 13, w/Down syn. and autism

[momsixtimes]

As I sit here my 24 year old daughter with Down syndrome is writing a thank you note after taking the family dog for a walk.  She has friends, texts way too much and loves Facebook.  She is a busy young lady with a full life.  Independent and self sufficient are words I would use to describe her.  April was born just prior to my 40th birthday.  She came along as number four and because of her we adopted 2 boys with Down syndrome who are now ages 20 and 15.  It does seem overwhelming at first but all children are overwhelming if you try to think about what will happen when they are _____________________years old.  My advice is embrace today, enjoy your baby when he/she arrives, live one day at a time and don't try to learn everything there is about Down syndrome in the time leading up to the birth.  Way too much information out there.  Daily you will learn and daily your child will grow and together you will have a wonderful life.  I am head over heels crazy about all 6 of our children and what each unique individual has accomplished.  Check out my blog for a look at raising 3 kids with DS.

www.aprilanecdotes.wordpress.com

[violettesmom]

Hi there - just wanted to come on to say that all of the things you are feeling, and thinking, right now are pretty typical for moms when we get the surprising news that our child will have Down syndrome.  

As one of the posters mentioned earlier - www.downsyndromepregnancy.org offers a bunch of great information - be sure to download the free e-book and read it.  There is also a booklet for 

You might also find comfort in my list of things to do instead of worry on my blog: http://yomammamamma.blogspot.com/2010/05/down-syndrome-pregnancy-50-things-to-do.html

My daughter is 5 years old, and a riot (check her out a few weeks ago saying the Pledge of Allegiance - http://www.youtube.com/watch?v=9u8M2Ddrzn8&list=UUxTPRAayH6UUuPsGwjOtMLw&index=2&feature=plcp)  Being her parent isn't what I thought it was going to be when I first heard the words "1 in 16 odds your child has Down syndrome."  It has included much more joy and normalcy than I ever might have guessed. Most parents are surprised how much their baby with Down syndrome reminds them of their other children - after all, our kids are 50% of us, and 50% of their father - all the same chromosomal material we each have, plus a bit more of some on the 21st.

(Oh, and I work full time and have two other children - to be sure, it is busy, and the first year particularly - but so much fun!)

Missy

[jtkkmom]

Congratulations on your pregnancy.

As some of the other pp's said, most of us families of kids with DS are very positive. We have been so blessed & I am the proudest mommy to my just turned 5 year old with DS.

The Baby Center board is the only board that I have heard of with a group specifically for moms to be who are expecting babies with DS. It is a wonderful, supportive boards & I'm sure the ladies there will make you feel right at home. Their Down syndrome board is also a wonderful supportive board.

The following link is to a 3rd link on BBC. It is the Unlimited Potential board. Many of those moms are interested in more alternative, therapies, natural foods, etc.

http://community.babycenter.com/groups/a6729133/unlimited_potential

My dd just turned 5 & is an energetic, chatty, curious little girl. There is never a dull moment with her around! She goes to a mainstream preschool, takes swimming lessons, plays T ball & does pretty well everything her big sisters do. She has been reading since she was a baby & now reads at a mid 2nd grade level for fun. If you want to read more about her, you are welcome to check out my blog:

downsyndromeupupupandaway.blogspot.com

[lioralourie]

Hi!   We had no prenatal diagnosis, and were surprised when our LO was born with DS.  It was a rough two weeks, then I got into TREATMENT mode.  I had already healed my older child from PDD NOS, a mild form of autism (vaccine damaged at 2 months of age and problems worsened till I began treatments at age 3y2m, totally healed by age 5.5)

Anyway when Etel was born, I KNEW there was something to help biochemically.

There are many treatments for DS, but your doctor will not know any of them.  It's critical you get on some good lists, like Lawrence Leichtman MD's yahoo group DSTNI (TNI means Targeted Nutritional Intervention) and Einstein-syndrome.com/join and Yahoo group Down Syndrome Info Exchange.  Those three lists alone will tell you loads about where to start.

First, research the vaccine issue thoroughly as people with DS are much more prone to damage from toxins (current study stated that 1/6th of people with DS also have autism dual diagnosis)  So you want to be extra cautious what you put into that little body.

From infancy, the priorities are

1) surgeries (many babies need NONE) and stabilizing oxygen and infections after birth

2) establishing Breastfeeding.  See these documents for BF and email me so I can send you the La Leche League pdf pamphlet too.  lioracc at yahoo.com.  Check out my posts here http://asianparentsgroup.icyboards.net/showthread.php?tid=254&pid=1605#pid1605 for much more DS breastfeeding info and download the files as well.  There are THREE linked DS BF documents in my two posts. 

3) reduce toxins, non toxic home and personal care products and diapers, maybe cloth, healthy whole foods, water and air filter if you live in polluted area

4) Neurodevelopmental principles.  The Einstein-Syndrome list and Dr. James Macdonald PhD's methods for late talking children HERE groups.yahoo.com/group/COMMUNICATING  will have the best recommendations.  Basically, there are optimal ways to hold, play and be with your baby every day that will enhance communication skills, physical milestones and brain development and it is very important to learn what these are.  

5) Start Supplements in infancy.  Begin slowly and work up steadily.  First:  probiotics, Vitamin D drops 1,000-2,000 iu a day, and DHA, 1/8 to 1/4 doses at first, start individually, working up to full dose.  DSTNI or Einstein Syndrome will have brands and recommendations for you and the cheapest places to buy each - these mamas are PROS!   And add in  Nutrivene-D when you can add it in.  If you cannot add it in successfully to a bottle, then you can take it and breastfeed and add in the Microencapsulated onto applesauce or other food as soon as you can.  Microencapsulated tastes better than NV-D powder.  

Other supps can come later, get these basics off to a good start early though.  

Enjoy your baby!  Our girl is 3y5m and doing GREAT, talking, dancing ballet, just a fabulous kid.  You definitely can ameliorate the destructive proteins in the extra 21st chromosome.  I don't want to burden you with the WHYS but if you want to know, most of it is here http://www.lleichtman.org/tni.shtml  and here http://einstein-syndrome.com/biochemistry_101/wipers_bus/  and http://einstein-syndrome.com/biochemistry_101/hole_bucket/  also see

http://einstein-syndrome.com/2009/04/11/top-15-things-a-new-parent-should-know/ for some awesome info and priceless advice. 

It will be OK.  Your other kids will be jealous, mine certainly are, they feel I "love her so much more" and I have to say that while I love each kid in their own way, I am MUCH more involved and invested in all Etel's accomplishments. She has really brought out the best mommy in me, and I have a feeling you will feel like me in a couple of years - not even sure why you were sad and afraid!! I look back at that time and can't even relate to how I felt then!

[shirley tullett]

Hello

I just came across your message whilst looking for something on line and felt I must reply.

I have a younger brother with Downs syndrome and he is the most special person you could ever imagine.  He is 42 and we have grown up together and are very close.  

When he was born my parents were totally devastated and had no idea what to expect.  Had we known then what delight and joy he would bring to our family, there  would have been no need to worry at all.  

I have managed to teach him to read and just recently to use a computer.  These children are often quite capable of learning.  They just need lots more time and patience than a normal child.  They are very loving and caring and generally kind and thoughftul to others, unlike some normal people.  There are lots of plus points and I must say from my experience I am very happy that my brother has Downs as he is so much more special than a normal brother would have been.

You will not know what to expect or how badly your child will be affected.  I have met lots of my brothers Downs syndrome friends over the years and I must say they all speak quite well  and can do lots of things for themselves and are very happy and have good lives.

If you want to ask me any questions, please do.  I think you may find you have a blessing in disguise as these are often wonderful children and a lot less trouble than normal children even though they need extra care and lots of time to learn things. They will get there in the end if you are patient. It is all worth while.  I know this is probably impossible for you to imagine right now but my family and friends all love my brother very much and we have a better life for having him in our familiy.  I hope you will find the same one day.

Shirley

[foolishpony]

OP here. I want to say THANK YOU to everyone who has posted. It is an emotional roller coaster right now for me, and reading all your kind words have been a big help. I'm still trying to process so much new information -- this may take me a while!
 

[SoCaliMommy]

 i didn't see anyone suggest reading this blog.... her daughter has DS   http://www.kellehampton.com/2010/0 1/nella-cordelia-birth-story.html

 the link goes to the birth story of her daughter. Edited to add she's written a book about her journey and there is a trailer on the bottom left side of her blog.