Tuesday, March 20, 2012

A Positive Outcome

This is the final post in a series about the new tests that detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding these tests, as well as bring a call to action. As always, thoughtful and respectful discussion is encouraged in the comment section.


Before I introduce our final guest blogger, I just wanted to thank every reader who took part in this series of posts - whether you submitted a photo or a story, left a comment, or sent me an email, your contribution to this important discussion was so valued and appreciated. I had many, many readers contact me saying that they were sharing this series on a pregnancy forum, or with medical professionals they knew or worked with, or with friends and family. As one commenter said, this is how grass roots movements begin, and I truly believe these kinds of discussions and blog posts are vital to getting information to the general public.

I have several more posts that I wanted to include in this series, but I have a very important post to share tomorrow, and it just can't wait one more day. Please make sure to follow along in the weeks ahead, as I don't want you to miss some very special follow-up posts to this series.

And finally- I hope you will forgive the fact this post is going to be a little photo-heavy. I had so many gorgeous photos submitted for this series, and I needed to squeeze the rest of them into this final post. (And if you shared a photo and have not seen it in this series, please shoot me an email and I will post it in one of the follow-up posts- I did not intentionally leave anyone out !!)

My final guest blogger is one of the women I look up to most on this journey. Missy Skavlem is a blogger, a mother, an outstanding advocate, and a wonderful friend. She is the president of Down Syndrome Pregnancy, one of the very best resources for expectant parents that is available online.  She is an invaluable asset to our online Down syndrome community, and I so appreciate her taking the time to share her experiences here. Please take the time to visit her blog, Yo Mamma Mamma , another great resource for information regarding Down syndrome.

Missy's daughter, Violette

Three Years on the Baby Center Down Syndrome Pregnancy Board

On Feburary 27, 2009 , I became a "Group Owner" over on the Baby Center Down Syndrome Pregnancy Board. Basically, the board is for women who are either given a positive prenatal screen for Down syndrome (like I was), have markers for Down syndrome or have a child who will be born with Down syndrome as confirmed by and amnio or CVS test. Most recently we have also been joined by women who have gotten a positive result from one of the new blood tests. All of the women who are on our board have decided to proceed with their pregnancies.  This board is for the ones who make the decision to bring their babies into the world.

It has been a wonderful three years for me, and I've learned a lot - probably learned more than what I'm able to share, in many ways.

I sometimes fear that many of us with children with Down syndrome – those of us who had a surprise diagnosis after birth , or who are very distanced from our diagnosis – have a hard time empathizing with the very painful “here and now” of the diagnosis.  Our understanding is clouded by the child we have, the child we love, the child who isn’t scary and is so worth having.  It is hard to understand the perspective of the moms, and the pressures that are put on them.
Sarah, Aiden, and Jacob

While we are supporting the moms who are keeping their child, the emotions and concerns they share seem to be almost universal.

First, almost every woman who learns that they may have a child with Down syndrome is struck with the most horrible fear they have ever felt, or ever imagined feeling. I think this happens for a number of reasons. I think Mothers, when they find out their unborn children have something “wrong” with them, cast the blame to something they did or did not do. This leads to feelings of fear, guilt, sadness, fear, uncertainly, self doubt, fear, anguish, terror, misery, and a desire to flee the situation.

The guilt extends to fear that perhaps we are somehow doing a disservice to the child by letting them be born into a life of “suffering” (remember, for most moms there is not understanding of life with Down syndrome at this point – we lean on stereotypes, and unfortunately imagine “worst case scenarios” including old videos of people with Down syndrome in institutions as their point of reference.)

Kendra, Quinn, and Wyatt

Most of us also come face to face with a prejudice they never imagined that we had. And then we have some shame for ourselves, and hate the part of our self that could on some base level reject the child that most of us so wanted to have - just because they have Down syndrome. So then we have to deal emotionally with that raw feeling of self loathing for that prejudice.

There is also the intense concern over medical issues, the ones they know, and the ones they don't. Kids with Down syndrome have many more heart issues, and learning your child has one is overwhelming. The fear of putting a child through one (or several) surgeries is one that is perfectly reasonable. These moms learn so much on the board in terms of what this aspect of parenting will bring for them. The good news is that most children with Down syndrome do very very well with heart surgery. In fact, the medical community has learned many things that have extended the life span of our kids.

McKay, Kaitlyn, and John Austin

They fear for their marriage, they fear for their other children, they fear for themselves. They fear they can’t parent a child with “special needs.”

Some are angry with God.  They feel abandoned, and are very conflicted. Talking about God in comforting ways can make them want to scream.   Others find their faith very grounding.  Then again, others don't believe in God at all.  We wait for their cues and listen to them for cues as to what will bring them the most comfort.

They hear things like, “I never had the test. I knew I loved my baby too much to have the test.” For a woman who had her own valid personal reasons for having the test, this comment can hurt them.  (Please note that the author of this post did not have invasive testing, - 1 in 16 odds after an ultrascreen test.  After learning the impact words can have for pregnant woman and woman who have children with Down syndrome in the world but chose to have the testing and love their children tremendously, I have removed that phrase from my vocabulary. )

Will, Sarah, and Kian

While many of the moms are dealing with all of the various intense emotions I describe above, many are dealing with people who also put additional doubts in their minds. The Doctors some of the women have to deal with are horrible - they are prejudice, ill-informed, have their own agenda and do so much emotional harm to the women they deal with. (Others are wonderful.) Some family members also know how to say exactly the wrong thing to a mother. (And some are an enormous comfort.) And then there are husbands who are sad, and confused, or rocks of strength who never show any self doubt.

Top all of that off with the cherry that is being completely hormonal due to pregnancy, and PHEW, it is an emotional situation.

That's why I admire the woman to find their way to our little corner of the world. They know themselves. They may be total wrecks, and full of fear and doubt. But they are brave. They are BRAVE. And they seek out the truth. And understanding.

We talk with them. We help them calm down. We tell them that they should try to be kind to themselves. We explain to them that for many of us, the worst part of being a parent of a child with Down syndrome is the learning about it part. The parenting the child part is easy. The loving the child is easy. The therapy, the doctors appointments are generally, other than certain times - manageable. We explain to them that the negative doctors they hear from know about Down syndrome from a text book they read years and years ago. They are as outdated as the (bad) advice they are giving. We tell them that no one knows what any child will be like, or what challenges they will have. We let them know they will still have a nice life, they will still go on vacation, they will have tea parties, and dance, and laugh, and play, and go out to dinner, and go to ball games and read, and be on the computer, and watch movies, and be normal, normal, normal.




But we don’t sugar coat things either. Health issues are a real factor for these mothers, and we know that in some sad cases their children will not survive the health issues.  We have to balance that very real fact with the knowledge that for the vast majority of us it does not happen. 

And, yes, we also share that as a parent your life will be extraordinary too because of this extra chromosome. You will meet (wonderful) people you didn't know, you will learn things you didn't know, you will go places you wouldn't have, you will have your eyes open to ignorance and prejudice, and you will fight it. You'll have an extraordinary journey that you wouldn't trade for anything.  Many mothers come back after their child is born to validate that yes, life does go on, that the group owners on the board do speak the truth, and that they love their children just as they are, and that the feelings the moms feel prenatally don’t reflect how they will always feel.

Shane, Lucy, and Quade

Isabelle, Rylan, and Madison

It is so hard when moms get that diagnosis not to scream "YAY!! Good for you! You will learn that this life is a good one and this child is going to be so good for you! You are so lucky lucky lucky to be joining our club." While this is how we feel, this approach leaves moms feeling that they are inadequate parents because they are fearful and sad.  Or they think you drank the Down syndrome “Kool-Aid” and should be disregarded. Instead, we give them a virtual hug, let them ask questions, give them support to feel the things they are feeling, and work through their emotions. We know they will get to the other side, where we are. We've seen so many moms go from being a total wreck to being totally in love.

Nicole, Luca, and Brooklyn

One of the other co-owners on the board, Nancy Iannone, who has led this group for over 6 years , is so wonderful. Nancy has had communications with more women with a Down Syndrome Diagnosis than any other single person on the planet.  I learn everyday new things from her about compassion, Down syndrome, hearts, parenting, and support and so much more. What a great resource she is to so many of us. Her little girl inspired me after Violette was born - I saw a picture of her with her sisters, in her bathing suit and the sweet and silly smile on that pretty little girl’s face let me see that I had a lot to look forward to with Violette. Nancy is an amazing person, and one of my dear friends.  I talk to her almost every day about Down Syndrome Pregnancy, the non-profit that she founded.

Lilly, Ella, and Abigail

I wish everyone could hear the words “You baby has Down syndrome” and jump for joy, instead of this sadness. But I know that hearing news about your baby before even meeting him or her leads to a whirlwind of emotions that are not settled until you lay eyes on that sweet baby.  And in that unnatural state, these moms need the right approach, the right kind of support. It is personally rewarding for me to be there, at times emotionally exhausting (there are times I feel like I'm reliving my initial emotions, and that can be hard), but so needed and I get so much out of doing it. These brave women need a shoulder to lean on, and they need someone who has been there, done that.   They need the rich resources on the Down Syndrome Pregnancy site, and to read the many many comments left by the "been there, done that" mom's who are further down the path of their life with a child with Down syndrome to help ground them.

Our little corner of the world isn't a place many women of childbearing years want to end up. But once they find themselves there, I'm glad that little safe haven is in place for them and the beautiful, silly, smart, fun, happy little people who are going to be coming into their lives.


Amy said...

Love this post, Missy!! :)

Education: Exploring Online Learning said...

My comment is totally unrelated to this post. When this popped up in my reader, I was like, "Wow, it's crazy how much Lily looks like Nella in that top photo!"

Because it IS Nella.

Lisa said...

Beautiful post. Thank you for offering some perspective on a side of this I've never really thought about.

Linda said...

Thank you so much for shedding the light on people saying, "I didn't do testing because I was going to love my baby no matter what. I was going to keep my baby no matter what." We loved our baby, too, and were going to keep her no matter what. We still chose to have an amnio so we could know what to expect and to educate ourselves. It is so very hurtful when people say those things.

Shannon said...

Testing isn't about loving you child or not, its about information. It's how you use that information and with what mindset you act in that shows the love for your child. As hard as it is for this pro life mom to admit, I fully believe some moms who immensely love their child still abort because they took what information they were given and decided death was in their babies best interest. My heart breaks for moms who believe that, and what they are missing out on. And that's why this series and the rest of those of you out there that are helping put out accurate and considerate information are so incrediably important, to both hurting and scared parents and little yet-to-be-born lives that are relying on information to save them

Shannon said...

Testing isn't about loving you child or not, its about information. It's how you use that information and with what mindset you act in that shows the love for your child. As hard as it is for this pro life mom to admit, I fully believe some moms who immensely love their child still abort because they took what information they were given and decided death was in their babies best interest. My heart breaks for moms who believe that, and what they are missing out on. And that's why this series and the rest of those of you out there that are helping put out accurate and considerate information are so incrediably important, to both hurting and scared parents and little yet-to-be-born lives that are relying on information to save them

Anonymous said...

I had a 1:6 odds for DS and similar odds for T13 and T18. I was also high risk for spina bifida or cerebral palsy and the doctors thought my baby also had a serious heart problem that would require immediate surgery (TOF or COA). We couldn't believe it --- everywhere we turned for more testing it was bad news. They said I might have to deliver when she was 1 lb. 8 ounces and they weren't sure if they had ever done successful heart surgery at that size. I was monitored every 2 days by a high risk perinatal group for fear of stillbirth and due to lack of growth and other problems.

I found my way to the BBC board and learned about DS. This is where I also learned of Reeces Rainbow. I visited every day, taking in more and more information, trying to stay strong but crying every day on the way to work.

My baby was born VERY premature. There were over 30 specialists at the birth, at our state's largest medical center, anticipating all of these types of diagnoses and problems. I almost had an anxiety attack looking at all the doctors in the room and the teams of specialists standing in the hallway waiting to examine the baby and take her to the NICU. It really reinforced how serious they thought these problems might be. Imagine our shock when she had NONE of these conditions or problems. The doctors were absolutely stunned and said they'd never seen this before. How often does this happen? Does this EVER really happen?
The reason I'm telling you this (sorry it's so long) is to let you know that this extremely stressful journey and our regular visits to the BBC Down Syndrome Pregnancy Board and the Down Syndrome Board changed me. I never thought about DS in any meaningful way before this pregnancy, having had uneventful pregnancies in the past.
Today I am a proud mom of a healthy, tiny peanut who is not on any growth chart, adjusted or otherwise. She inspires us to donate to many of the children on Reeces Rainbow and we have given thousands of dollars last year and this year (we are very blessed financially). Missy, I want to say thank you. My donations and advocacy are a DIRECT result of the two boards on BBC --- what I learned there about DS and my introduction to Reeces Rainbow and the blogs that advocate for the Reeces Rainbow children.

Forever Grateful in USA

Lisa said...

The above comment makes every ounce of energy worth it in advocating for the people we love with Down syndrome. Thank you, Forever Grateful, for taking the time to leave a comment...

Patti said...

I agree with Lisa- THANK YOU, Anonymous !!!

JC said...

I LOVED this post!!

Alysia said...

Beautiful post. Just so perfectly explained. You nailed it. Thanks for supporting all of us, Missy and Nancy and Amy.

cara said...

Oh how I LOVE seeing all of these faces. Maybe I am a bit bias, but kids with down syndrome are just EXTRA, EXTRA adorable!!!!

I did not do the testing, but I wish I had known ALL of you when I first had Benji. I wish I had known that all of you all were out here to connect with. I am SO thankful I have found SO many wonderful connections now.

I love Shannon's comment about how many of these mothers may have decided that death was in their babie's best interest due to the information they received. That is very true I am sure. It is also very, very sad. We do need to get as much positive information as possible out there so that more of these precious lives can be saved. And this is just what you are doing with these posts Patti. Thank you!!!!

crystalkupper said...

I'm so glad to have this resrouce to pass on to others! Thanks for sharing.

Leah said...

Thanks for having Missy here Patti. Missy, I am truly grateful for all your insight and your honest and poignant words. I know how much you've helped so many people.

Anonymous said...

Thanks to ALL the guest bloggers! I've enjoyed each and every one of them :) I think I've gained a few new followers on my fb wall since posting these...yay! Hoping and praying that more people will get "hooked" on this subject & share God's love through advocacy!

Elk Grove, CA

Rebekah said...

Thank you so much for this series of posts. I've been sharing them with my Facebook world, and as a sister of a wonderful gal with DS AND as a mom-to-be just beginning the journey (11 weeks today), I fully plan on asking my doctors and hospital what resources they offer to mothers who are given a prenatal diagnosis of DS. Like you said, grass roots! Anyway, for anyone who might be reading this having questions about life as adult with Down Syndrome, I wrote this blog post about my little sis:

If that link doesn't work, you can get there via clicking on my name (I think haha). Thanks for letting me share!

Jennifer said...

What a beautiful post, Missy! Thank you for helping to articulate the most comforting approach to welcoming new mommas. Your wisdom is so appreciated <3