#NeverAlone

Juliet, on the day she was born

Juliet, on the day she was born

No parent should be alone when they find out their child has Down syndrome. But, right now, too many are.

In our case, we were told our daughter had Down syndrome about 2 minutes after she was born. She was still on the warming table, and a neonatal nurse shouted over her shoulder as she left the delivery room:

Doctor, check the baby. I think she has Down syndrome.

The OB cleared the room and went over the physical characteristics that caused them to believe Juliet had Down syndrome. My wife’s first question was, “what’s her life expectancy?”

Now, please appreciate that.

For most every parent, the birth of their child is described as the happiest moment of their life. And it certainly was for us. But that lasted for all of 2 minutes and then her mom is wondering if the life she just gave birth to will end in a matter of years.

Once we got to our room at the hospital, a pediatrician visited and talked to us about raising a child with Down syndrome. A geneticist woke us up the following morning to explain that more than likely the extra 21st chromosome that is the cause of Down syndrome came from my wife’s egg–nevermind whether that was relevant or appropriate to share at that time. And, then, upon check out, as I was paying the bill, I was handed a printout that was from some plug-and-chug program that read,

[BABY GIRL] has Down syndrome

It proceeded to list only the associated health conditions.

And. That. Was. It.

That was all the information we received. No pictures of children with Down syndrome living in today’s world. Nothing about social supports, inclusive educational settings, or life experiences of individuals with Down syndrome.

Receiving the diagnosis made me feel as though I had been kicked down into a dark hole. A dark hole of ignorance and fear, not knowing what “Down syndrome” was or what it meant for my newborn baby girl. That’s where my wife and I lived for the first three days of our daughter’s life.

Of course, we had the benefit of having this squirming, chubby little baby to hold, to caress, and to remind us we first and foremost had our child to love. Juliet was really the only example of a baby with Down syndrome we had at that time, and in our eyes, she was an example of a beautiful little girl that we loved more than anything else.

But, we had nothing to understand what Down syndrome was. This was before iPads, wifi, and before the internet was ever-present. In hindsight, I’m glad for that, because the websites at that time had a very poor ratio of good to bad, with the bad far outweighing the good had I entered “Down syndrome” into a search engine.

Then, three days after Juliet’s birth, we were visited by Down Syndrome of Louisville’s Executive Director Diana Merzweiler and a parent volunteer, Julie Wright, whose daughter Jill was a few years older than Juliet. It was then that we got our first true information about living a life with Down syndrome. The hospital and medical team gave us a flimsy printout for me to use to climb out of the hole. Diana and Julie reached their hands down and pulled me out.

And, I have been forever grateful.

Unfortunately, our story is not the exception, but the norm.

Parents have long described receiving the diagnosis negatively. A study of moms reported awful stories both pre– and post-natally. A study just last year reported that parents have a negative experience by a ratio of 2.5 to 1–so for every 100 sets of parents who had a positive experience with their health team, there were 250 who had a negative one.

And, here’s the kicker, the medical establishment knows this.

When the standard changed such that all women are now to be offered prenatal testing, a survey was done to see how OBs were complying with the change. It found while almost all had changed their practice and were offering prenatal testing for Down syndrome to all of their patients, only 29% were providing educational materials. So, for every 10 patients receiving a prenatal test result, at best 3 were actually getting information to take home with them. With the increased uptake occurring because of non-invasive prenatal screening, more and more parents are being told before they have a child to hold in their arms.

Sadly, the new standard for delivering a test result, in practice, is to not give parents information.

This is wrong.

And, the National Center for Prenatal & Postnatal Down Syndrome Resources is trying to change it.

The Center (where I serve as the bioethics specialist) has 2,000 copies of its booklet Understanding a Down Syndrome Diagnosis available for each non-invasive prenatal screening laboratory to deliver to their provider networks. These labs know who is receiving a prenatal test result with their new tests. This provides an unprecedented opportunity to ensure parents receiving a prenatal test result for Down syndrome are also receiving the resource identified by the National Society for Genetic Counselors and the American College of Medical Genetics & Genomics and an independent study of expectant mothers as the information to give to these parents.

I know for us, just seeing the beautiful pictures would have made a world of difference. Plus, the photographs of adults would have reassured my wife that her daughter can look forward to a long life.

The National Center is running a campaign entitled “#neveralone” because it believes parents should never be alone and should receive the information recommended by professional statements to accompany a test result.

If you share this belief, I want to invite you to visit this link where you can sign up to show your support for this message: that parents should receive information when they receive a test result for Down syndrome. Also, if, like me, you have a story–a positive or negative one–about receiving the news, I hope you’ll share that at the #neveralone site as well.

We need to change how prenatal testing for Down syndrome is being done. Expectant parents need to receive professionally-recognized resources they can review when they’re able to process the news that their child has Down syndrome. You can help make this change happen.

Sign the statement of support and share your story. Let’s make sure parents finding out their child has Down syndrome are #neveralone.

Postscript: I am very appreciative for the support that has already been shown for this campaign. The campaign’s message is supported by Tim Shriver, the CEO of Special Olympics, and dozens of medical professionals have signed a statement of support–you can review both of these statements at the #neveralone site. Plus, 4,000 copies have already been distributed, and we’re very appreciative of those labs who are distributing the recognized resource. I hope you’ll join and add to the momentum of this campaign.

UPDATE: Cassy Fiano shares her diagnosis story and so does David Perry. Both support the #neveralone campaign. If you have written your own post, please share it in the comments below, tag me in tweet, or e-mail me and I’ll add it here in further updates.

Comments

  1. Michelle Gilliam says:

    Juliet’s newborn picture is so beautiful!

  2. Great post Mark. I intend to blog about this tomorrow (or possibly Wednesday). Our experience was similar in some ways, at first, but …. (well, wait until tomorrow).

  3. Thank you for this! To take away our joy and leave us with fear on such a special day……just wrong.

  4. I thought I saw something that said something to do with prenatal testing to help parents of children with Downs syndrome. What is that for? It doesn’t change anything. If the baby has Downs, it just notifies. It might also give the parent the notion that an abortion,( killing the baby) is an option. It isn’t. It never is, unless , it’s in the fallopian tubes. Does this web site condone abortion?

    • Many mothers who have had prenatal testing have valued the ability to process the news on their own terms, versus being shocked in the delivery room. Further, it allows for heightened prenatal care in the instance that there are associated health concerns. With prenatal testing becoming more and more accepted, there will be more women than ever finding out prenatally. It remains a fact that for most, they will choose to terminate. That is not condoning abortion, simply recognizing that it is the most likely outcome currently–and that is the case even in countries where abortion is outlawed; mothers will simply travel in order to terminate. Hopefully if mothers can receive accurate information and support prenatally, they will feel confident in their decision should they choose to continue their pregnancy.

      • I am unsubscribing from this email. I do not believe killing your own child, because the child has a handicap is moral. Who cares what is acceptable in our twisted and demented society? How can you even allow such rubbish to flow from your lips? Abortion, or killing a baby, who feels, and thinks, who is human, because it suits your needs, is inhumane. We treat our dogs better then that.

        • I’m not sure what “rubbish … flow[ed] from my lips.” This is why I hesitate to discuss abortion on-line. It is difficult for those passionate on either side of the issue to listen to what is actually being said and instead hear what they want to.

      • Loretta Reid says:

        Thank you for your service, Mark. I read your paragraph and understood you were simply explaining the current state of affairs for Down’s babies. I don’t believe Ms.Pryer grasped your meaning. It is such an emotional issue for many, as you stated.

  5. #NeverAlone
    We went in for our anatomy scan, which had been highly anticipated since we already were the proud parents of three girls. Everything looked great, growth was on schedule and IT WAS A BOY. Wow, a boy! Then, I noticed a look of concern on the technician’s face, which at first I tried to ignore. She stopped her scan, wiped my belly and said, “I’ll be right back.” I looked at my husband and mouthed the words “something is wrong.” I tried to hold back tears as all three of our other children were in the room with us. The tech came back, this time with a Dr. who then scanned my growing belly. She said, “We can’t quite get the view of the heart we need. I’d like you have a fetal echocardiogram, as soon as possible, we’ll call right now and see if they can squeeze you in.” BOOM, I don’t remember what happened for the next few (or more) minutes. I remember asking my husband to take the kids to Grandma’s house and then we’d have the scan, together. We dropped kids off and headed back to the hospital. I don’t remember what we talked about or if we talked. I was in a daze.

    Once we got back to the hospital, we were almost immediately taken into an exam room for the fetal echo. I cried off and on throughout the hour or so that it took. Tried to stay calm, worried about my son. MY SON. After the scan was over, we sat with a pediatric cardiologist (didn’t even know there was such a thing), who explained the heart defects they found. She explained that he would need open heart surgery. She then said she noticed I hadn’t had an amnio and that I may want to consider having one because 50% of children with Down syndrome have heart defects. BOOM, again. I stuttered, “But my SON doesn’t have Down syndrome, all of my tests have been fine. My risk has gone down with every blood test.” To her credit, she did not push us to have the amnio, she simply said, if you want to be sure, that’s the only way. She was really fantastic, she took her time, she drew us diagrams, she reassured us that everything would be okay. That our son would need surgery, but that his defects were the kind that could be fixed. We were so scared and heartbroken and worried, the worry was horrible.

    It didn’t take long for me to decide I needed to know for sure. I didn’t want to spend the rest of my pregnancy wondering and worrying. I called my OB and she was able to get us in to have the amnio right away (at the same hospital), on the same floor where it all started with that anatomy scan. I was terrified of the amnio, but I was more scared of not knowing. I remember something about having to sign forms for quick processing of the test because we only had 3 weeks to make a decision. (A decision, I thought? What is he talking about?) I only realized later that in NY State you can abort up to 24 weeks, that’s the decision he was talking about.

    The very next day my OB called, I was shaking as I picked up the phone, I already knew what she was going to say. Our son had Down syndrome. I somehow managed to say, “I. Can’t. Talk. Will. Call. Later.” She said, “I’m here for you whatever you need, whatever you decide.” (there’s that word again) Then I cried. That ugly, guttural cry. Then, I called my husband. He was at work, he cried, tried to calm me, but I needed to be with him. I said I’d come pick him up. I pulled myself together enough to make the drive to get him. The moment I saw him, the floodgates opened again. How could this be? Why us? It’s a BOY! How will we do this? What about our other kids? Is it fair to them? Can we do this financially? Can our marriage handle this? Can we handle this emotionally? WHAT ABOUT THE FUTURE????? Those types of questions, mixed with crying went on all night, until I fell asleep.

    I woke up the next day, eerily calm. I said to my husband, “I don’t know how we will do this. The only thing I’m sure of is that I’m having this baby, he is my son. He is our son.” My husband looked at me and said, “Then that’s it, no more crying. We’ll figure it out.”

    I’d love to tell you there were no more tears shed after that day, but that would be a lie. There were many tears. I was still scared. Every sono, every fetal echo, I worried. What else will they find. I was scared, but I was sure. My fears did not subside until the moment Carter was born. 12:40pm on January 6, 2012. The instant he was born, I realized I had been worried that he’d never see this day, that I would never get to hold him and see him and smell him. In that moment, my only regret was all the time I had wasted on worry. He was perfect.

    • Your post made me violate the no more tears maxim. Thank you for sharing.

    • Leigh Ann Arnold says:

      3 girls here too before our guy was born. This brings back so many memories! What gifts we’ve been given!

      • Samantha Clifton says:

        Our daughter Lily has down syndrome and it was the most scarey time of our lives finding that out. All the information we received after was pretty scarey too. Our daughter is now 4 years old, has no ill health, her low tone is now non existent and she is going to mainstream school foundation 2, already full time. She is slightly delayed in speech but is catching up by the day. Please everyone don’t be so disheartened when looking at having a child with ds. Lily is our heart, soul and joy, she makes us laugh with her beautiful nature and cheek every single day. I did find that I was treated oddly in hospital and that some of the nurses seemed embarrassed to deal with me and Lily , which for at least 3 years now I have offered my voluntary services to come into training sessions at the hospital to talk about dealing with this. As yet Hillingdon hospital maternity, have not been interested. I was in hospital with Lily for a week, as I was full of infection inside when they got Lily out. She decided to turn sideways and come a month early, nothing to do with her ds more to do with my infection not previously identified. During that scarey first week I met so many doctors and nurses that need guidance with how to treat mum’s with babies with ds – they caused me more scars on my heart than, having Lily ever could. Please everyone believe me that having a baby with ds is not the end of the world it is just the start of a sometimes daunting but more times, wonderful journey. I so often look at my beautiful child and think how very lucky I am, god forbid that I could have taken them up on their over generous offers to get rid of her, when she was in my tummy – the thought of that frightens me more than anything else in my life.

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