Most kids known to have Down syndrome in their mother’s womb don’t make it out alive. I’m thankful ours did.
The third Sunday of January is National Sanctity of Human Life Day and since that happens to be today I thought I’d share a few things that constantly weigh heavy on my heart.
This website and our other social media channels have a wide reach and we regularly receive messages from people all over the world. Most of these messages are overwhelmingly positive and give us great encouragement. But every once in a while we receive a message that reminds us that our world is deeply broken and in desperate need of repair it. Here’s an example of one of those messages that we received just yesterday:
I wouldn’t want the burden of having a child with Down Syndrome. I would have terminated the pregnancy.
Sadly, this isn’t just the opinion of the person who sent me this message. In fact, 92% of children with Down syndrome are aborted (yes, 92%!) This means every time you see one Noah (my son) there’s 9 Noah’s you don’t see as a result of people not wanting the burden.
In other words, if you’re a baby with Down syndrome, your mothers womb is a very dangerous place for you.
And it breaks my heart.
“Get me out of here QUICK!’ – Every kid with Down Syndrome, ever.
“Yo, we don’t want to be extinct. We sort of like living.”
My friend Gabe Lyons notes, “people with Down syndrome have been targeted for extinction.” Our culture has become obsessed with making it easier and easier to detect if a child has Down syndrome in the womb so parents can murder their child make an informed decision.
I couldn’t begin to count the number of stories I’ve heard from parents of children with Down syndrome about how their OB/GYN”s repeatedly tried to get them to make an even more informed decision after telling them they planned on bringing their child to full term. In fact, one dad told me he was so upset by the repeated pressure of their OB/GYN to abort their child he told him if he suggested they abort their child one more time he was going to hit him! This is why I highly recommend every OB/GYN / Pediatrician in the world read our letter on how to correctly deliver a Down Syndrome diagnosis.
Even after a child’s birth this discrimination and blatant disregard for human life continues. In Noah’s birth story we shared how our OB’s first words to us were,
I’m so sorry.
followed by,
I’m going to prescribe you some antidepressants.
to which we politely declined.
Our culture reminds me almost every day that it’s on a mission to exterminate everyone who they deem a burden, or less than worthy of life.
I don’t have all of the answers. In fact, I have no answers. But I have a few ideas…..
1. Pray
Every since man first decided to trust their way over God’s our world has been going down hill. The Bible is clear that our world isn’t getting better, in fact quite the opposite. There are some problems that are so big that our best efforts to change them will never be enough.
The good news that we have access to The One who created the world and all that’s in it. When we reach the end of our gifts, talents, abilities, and creativity that’s where the true power begins.
In other words…
Prayer changes things. We should pray often for God to protect these little children in the womb, and that He would change the hearts of our culture to view all people as worthy of life, and recognize that all people are created in the image of God (in the womb or out….Down syndrome or no Down syndrome.)
2. Be Kind
Mean people rarely change the world (for the better.) Enough said.
3. Tell Your Story
If a tree falls in the woods…..
Stories have power….but only if they’re shared. The internet is a powerful place, and these days we all have access to a global audience. If you have a child with Down syndrome (or other special need) find a way to tell your story. You are your child’s biggest advocate. You have to find a way to help the world understand that your child has more in common with a typical child than people think.
Start a blog. A Facebook page, twitter account, heck, even an Pinterest page. Call up your local college and offer to come speak to a class about your family’s story. The possibilities are endless and every family had a different way of telling their story.
Different is ok. Being silent isn’t. So share your story…as often as you can. Here’s 14 ideas to get your started.
Oh, and just in case you think God doesn’t use stories to change lives, here’s a quote from another message I recently received:
“I just got the phone call last night that my blood work was abnormal and my child may possibly have Down’s Syndrome. After the initial shock and confusion I buried myself in research looking for more info and a better perspective on what this could possibly mean. While my first thought was to abort if DS was confirmed all that has changed thanks to your story and others like yours.”
That little kid’s life is forever changed. All because of a story. Look for ways to share yours today.
5. Constantly Reflect On Your Own “Burden-ness.”
Never forget that you were once someone’s ‘burden’ (who knows, maybe you still are!)
People aren’t burdens. People are gifts from God. Created in His image for a purpose. Every. single. person. on. this. planet…..in the womb, or out. Let me say it again, this time read it slowly.
Every person on this plant is a gift from God, created in His image for a great purpose.
Only 1 out of 10 kids with Down syndrome make it out of their mother’s womb alive which make a mother’s womb a very dangerous place for a baby with Down syndrome. Thankfully our son was one of the lucky ones. So was Cade. And Seth. And Julian. And Ellie. And all of these kids. And these.
My great prayer is that God will change the hearts of our culture. That our culture will come to understand the value of human life (even little bitty lives.) That more children like my son will be brought to full term. That we will stop aborting children in the womb for any reason…especially simply because they have an extra 21st chromosome.
1 out of 10 is pretty bad odds, but thankfully God likes bad odds.
In God I trust,
Rick (Noah’s Dad)
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I do remember & I mentioned it before, sitting with two friends and the topic of what we would do if we had a challenged child came up. I was the only one who wouldn't terminate. I was shocked really. I have a little boy who has a serious disability. Its not visible but as I read you say, you fall in love with your baby.
We were in Iran and you could get as many ultrasounds as you wanted. They were like $10 each. My husband would say Heleeen, let's go visit Taher...and there I would be drinking fluids and getting goo all over my tummy...just to see bug-a-boo.
I was dying for him to be born...not just so he would stop finding new and more hideous places to kick me, but I wanted to hold him and tell him each day he owes me 999 kisses..like I do.
Its all about societal "norms" . All through our history individuals follow the current trend like ..well sheep. They follow the leader. When my Grandfather was young, it was trendy for women to be chunky. Chunky meant you were healthy. It was trendy to be modest too.
Now everyone runs around half naked and the ideal girl is not Miss piggy but Miss twiggy. My Mom was the one who taught me not to follow. She said not to let anyone push me into following something I feel is wrong. Sometimes that can be really lonely but she also said sometimes being alone is better.
We need more people like you to lead the followers away from the trend that causes them to make bad choices. I am always happy and inspired by seeing you both with Noah and your honesty and bravery are commendable.
I have a son that was born with Spina Bifida. I had a miscarriage after him and then became pregnant again it was a high risk pregnancy i had gone into early labor at 4 months. The OB insisted that he had to do a very dangerous procedure amniocentesis to see about birth defects i told the Dr. It didn't not matter i would not terminate my pregnancy he told me i wa being irresponsible. We argued he said he would withhold tx i had the test but told him i didn't want to be told results he said they were doing it for there knowledge of how to treat me. He was born full term. My son with Spina Bifida has undergone 38 sugeries he is 27 married and works in a trauma center healing others ALL LIVES MATTER. THANK YOU FOR WHAT YOU ARE DOING I HAVE FOLLOWED NOAH'S JOURNEY FOR A VERY LONG TIME!
I've known very few people who have Down Syndrome, and I think a big reason why is because I was born at a time that prenatal screening was common. My mum had me when she was nearly 35. She often tells the story of how the doctors encouraged her to have amniocentesis because if the baby had Down Syndrome she "may as well have an abortion". My parents refused the testing because of the risk of miscarriage and because they knew they'd never abort me. The fact that the doctors preemptively encouraged an older mother to abort a potentially "defective" child is a telling and worrying indictment on Western society. As it happened, although my parents would never abort, the doctors had sufficiently scared my mother into thinking that I would have Down Syndrome that when I was born with a protruding tongue she thought I did have Down Syndrome. I don't.
Despite my siblings and me growing up with this story, I remember an occasion when I was talking to my brother shortly after his first child was born, about how he and his partner had chosen to have amniocentesis. I asked him what they would have done if his daughter had had Down Syndrome and he said "who would want to bring that into the world?". My brother has been humbled, however, by this first child of his, who was found to have an intellectual disability and other special needs. I wonder if we would have my wonderful niece here if they had known.
I've been following Noah's story for some time now, and it's obvious how much of a blessing this little boy is. If only there were more Noahs running around.
I respect any mother who has to make a choice. I know that for some choosing to bring your child to full term is the right choice, but for others it is not. Having a child with Down Syndrome is not the normal 20 year commitment of raising a child. A forty year old woman who finds herself carrying a DS child has to think about the next 50 years. And then what happens when the parents die and the child is left behind? I cannot judge any parents for their very personal and private choice.
I was 39 when I had Gracie, a child with downs, and i'm thankful that when i'm gone she has two big brothers and a big sister that will take care of her! I also wanted to terminate when I found out she had DS. I cried to the Dr and screamed that I didn't want this monster inside me but because of my christian upbringing (THANK THE LORD) I didn't. I was the monster for thinking such a thing! Now I have my Gracie who is now 5yrs old and is a blessing. I respect peoples decisions too, but not if it's just because they have downs. They are, after all, human beings. Not monsters!
Hearing the lie "personal and private" has resulted in our holocaust [abortion] sadly being accepted as truth by much of the world. The lie pervades the reality of tough choices where a "lesser" life stands in the way of another person. The lie will continue to spread as the difficulty of one person's life has a negative effect upon his/her caregiver. So, suicide is accepted as personal and private - old age is accepted as justifying elimination of a person - paralysis is another reason to end someone's life and on and on. The truth will not change nowever. We support oives that God creates and He alone decides the lifespan of all.
I have Turners Syndrome. I was once asked by a friend if my mother had known I had Turner Syndrome would she have elected to abort me. She said NO way! I was her gift from God!
When I was pregnant with my son, it was a high risk pregnancy. I was 41 when I got pregnant and 42 when I had him. While I was pregnant one of my 20 week ultrasound revealed Luke to have fluid on his brain. Possible hydrocephalus. I was given that horrible new in Charlotte at a fetal specialist. He told me I should terminate the pregnancy. He said my baby could be born with hydrocephalus and chromosomal abnormalities along with other things including down syndrome. I smiled in this man's face when all I wanted to do was break down and cry. I felt like I had failed my child somehow. At the end of our visit I told the doctor "If I have a child with DS, that would be awesome!" We left and I cried. Like I said I thought I failed my baby somehow. Each appointment after was never anything with fabulous news. I kept my faith and declined any lab work or procedure they offered to allow me to know if my child had a chromosomal abnormality in addition to the hydrocephalus. See, to me it would have never mattered. I would have loved my child the same and would have still WANTED him. As the week's went on I prayed and kept my faith. I asked for healing of my sons brain. And you know what? In time it slowly happened. One tenth at a time. But u took that one tenth and praised Jesus. After a long hard, high risk pregnancy, I had my Luke. The c-section had its possible hemorrhaging moments BUT when the doctor pulled my miracle out, he was perfect! No hydrocephalus! That afternoon when I was able to hold my son and he opened his eyes, I knew he had DS. It was a surprise! A surprise that made my heart melt. I felt like I just won the lotto on top of having this little 7 pound 2 ounce boy. He was perfect! You see, Jesus makes NO mistakes. He blessed me with my amazing little peanut. When I tell someone that my baby has DS they say they are sorry. Sorry? Seriously? Don't feel sorry for me or him for that matter. Jesus made my baby perfect. If I would have listened to that so called specialist, I wouldn't have had this miracle perfect little boy. Here is a picture of my Luke. He was born July 22,2016
Luke is ADORABLE! You are to be commended for holding fast to your Biblical convictions that God doesn't make mistakes, and Down Syndrome is not a cancer to be cut out and thrown away! Twenty-five years ago when the oldest two of our four children were in their mid-teens, an opportunity to adopt a DS baby was made known to us. I was excited about the possibility, for from the time I was 7, I had a soft place in my heart for these special people. I began to do my homework so I could be prepared, and understand what was involved in raising a DS child, from health issues to personality differences. After that, I contacted moms of DS children to make appointments for visiting with them and discussing the challenges as well as the blessings involved with raising these special gifts from God. But following submission of our application, we experienced the providence of God creating changes in our family which took us in another direction. Health, finances, and a major move to another area were clear indications that God had other intentions for us and the "yet to be born baby girl" with DS. In retrospect, it was evident that I would have been unable to care for the precious child, as much as I wanted to. I had to face my own medical problems in the years to follow, and that would be about all I could handle with the help of my older children. I have reached my senior years, now; my four kids are grown, and we now have 8 grandchildren split between the Pacific and Atlantic Coasts. For more than ten years, we were very involved with Home Schooling ministries in both California and Arizona, and, for a year, produced a 36-page monthly newsletter which was distributed to over 600 homeschool families. God has used our family in very different ways than I could have ever imagined some 25 years ago! No, I will not be raising any sweet-natured DS children of my own, but I will continue to be a dedicated cheerleader for those like you, who do!
Well I can..... BECAUSE... I AM THAT MOM! Psalm 139 tells me he was PURPOSEFULLY planned and WONDERFULLY made. And he was... And is.... And guess what. He also has autism... We have never regretted or questioned his life. I'm now 64 and have battled two kinds of stage three cancers! Hard as it's been at times I would repeat his life in a HEARTBEAT! You see this life isn't ALL ABOUT ME. This precious charge has taught the world to sing by his unconditional love. He's also gifted his Father and I with becoming better people... We have not spent the last 24 years asking the "why me" question! Why not us? Why not you? Probably because these children are blessed to families. In hopes that they will embrace the value of human life.... Every human life! Watch the new show... "Born this way" lives storms does not make the world a bad place to exists...it merely causes us to more fully embrace the rainbows. We've had the delight in raising 3 typically developed children prior to our Son Nate... He has blessed us with EQUAL joy.
He is our Heartbeat. I'm sorry for all those dear human beings that someone else deemed less desirable to function in a wonderful and mysterious world. I am sorry for that families choice to take away the right for a most special worthy birth to happen! They cheated themselves of a very rewarding life experience!
Pro choice? How can you honestly know when you have no way of foreseeing how this life YOU made possible by the sharing of your body... Isn't a blessing beyond measure!
I just updated my blog with an entry about prenatal screening. I'd really like to see more balanced views of people with Down Syndrome by doctors and genetic counsellors, and also it's important for the parents to speak up, so people can see that they aren't headed for a life of misery if they choose to keep a baby with a disability. http://babyfight.alwaysmad.com/?p=172
Oh how I love this post! Thank you for speaking out--especially since you have quite an audience! I, too, want to share about little one, and do everyday in person in real life. Still want to reach others--so many of them out there--so many people unaware. Thanks for the encouragement to do so!
Shocking. Truly appalling. Having a special needs child is such a gift and it's beyond belief that people don't recognize it. The same horrible thing is happening to children with cleft lips & club feet.
Very sad indeed. Our hope is that our site will help give people hope and encouragement, and in turn bring more babies to full term. We should keep praying for protections for the unborn.
After reading about the potential 'cure' for Down's today, I decided to read as much about it as I could. This is a great post and I've learned a lot about Down's from your blog today. I have no children, but was recently pregnant (miscarriage @ 10 weeks). Early on, my OB offered prenatal testing and since I'm low-risk for most issues, I declined. I don't like unnecessary medical intervention, especially if nothing much can be done to help a fetus in utero. Anyway, I just wanted to bring up that I think your statistics may be incorrect because taking into account people like me who do not get genetic testing, the number has to decrease the percentage from 92%. I would not know until much further along (probably 29-30 week sonogram) if I were carrying a child with Down's.
The 92% statistic is misleading - it only reflects women carrying a fetus with a confirmed diagnosis of Down syndrome. Up until a year or two ago, that meant that it really only included women who had undergone amniocentesis or CVS, both of which carry a substantial risk of miscarriage and both of which women frequently opt to undergo if they know there is a possibility that they might choose to terminate if the results are positive. So the 92% number is self-selecting and doesn't give you any sort of idea of what percentage of fetuses with an extra copy of chromosome 21 are actually born. We'll have a better idea of those numbers once NIPT becomes more prevalent, as it can detect DS much earlier and with no physical risk to the pregnancy. In the mean time, the big problem is not the legality of abortion but the invisibility of families affected by Down syndrome in the mainstream. I think it's safe to say that most people do not know somebody with Down syndrome. Let's change that.
Wow, what a great website this is! This website has given my husband and I so much hope and excitement for the future. I'm 20 weeks pregnant with my first baby and was already a high risk pregnancy because of my type 1 diabetes. Two weeks ago on one of the ultrasounds the doctor saw choroid plexus cysts on our little boys brain. She told us that this could be a soft marker for Downs. We had advoided genetic testing, but then decided to get a newer blood test done that test the fetal blood within my blood and is 99% accurate. One week later, the test results came back positive for downs syndrome. We were in shock and numb, all kinds of emotions going through our heads. It took us a couple weeks to settle down after that big news. We are Christians and we know God has big plans for us even though we may not understand them right now. I have done tons of research on downs but this website has helped the most, your story is truly inspiring. I can't wait to meet our gift from God, Samuel. Thanks so much for making this website available
Love your post! I know the statistics are sad, but I love your encouragement to tell our stories so people will know the truth about living with Down Syndrome. My granddaughter is 19 months old and has DS. She is an incredible blessing and I wouldn't choose to have her any other way.
Awesome! You sound like an awesome grandmother! :)
I know all to well what you mean, I found out very early 2 months and 3 weeks in that the baby had a cystic hygroma sorry wrong spelling all the drs begged for was testing and termination! They would make me come in 2 time a week to tell me what a judge mistake I was making and to shedule a termination and that the baby would die a horrid death after he was born and save him from that! Needless to say I told my docs off and left it in gods hands and was rewarded with the most smart beautiful little boy! Yes he happens to have Down syndrome but that doesn't define him as a person! He is one of the greatest gifts I'm so glad I didn't let the drs brain wash me! That's what it seemed like! I'm so greatful I had my boy! Thank you! For sharing and I hope that people don't make the mistake of terminating the greatest gift you will ever have!
Sorry If I misspell or something… not an English speaker!
Just wanna share I have a 28 y/o brother with Down Syndrome. We share and spend time regularly, we text each other daily (mostly emoticons and videos) and talk almost daily. Our relationship has made me who I am. I am a doctor and every single time I receive positive feedback from peers or patients regarding rapport with patients, compassion or positive speech, I use that opportunity to tell them how much I learn from my brother. He is such a big, bold, beautiful influence. I have learned to enjoy life, to be strong and positive, to be infinitely loving and to have the grace of overcoming challenges in life with hard work & a smile. Thanks for sharing Noah's life with all of us.