I’m the father of a two year old boy named Noah who was born with Down syndrome, and whom we love very much. I understand that in the course of your day to day work you often have the difficult responsibility of telling parents news they never thought they would receive – that there’s a good possibility that the little boy or girl in their mothers womb is going to be born with Down syndrome.
Why I’m Writing You This Letter
My hope in writing you this letter is to tell you some of the things I wish I would have known the day we found out our son was born with Down syndrome. Our son did not have a prenatal diagnosis of Down syndrome, and our amazing pediatrician did a great job of calming our fears, honoring the life of our boy, and letting us know we were in this together as she delivered Noah’s diagnosis. However, as you’ll read below, our interactions with our OB/GYN were not as positive.
As an OB/GYN you will likely be the person who delivers the prenatal diagnosis of Down syndrome. Hopefully this letter will help you to deliver a Down syndrome diagnosis to your patients in a way that honors the child, and gives parents hope and encouragement.
I can only imagine what you must feel the moment you first become aware that you’re going to have to give a Down syndrome diagnosis to a new parent, one who likely has no idea the news that you’re about to drop on them. But the truth of the matter is you’re still going to have to have the conversation, and as the first point of contact for a new parent of a child with Down syndrome you have a lot of influence and authority. Those parents are going to be clinging to every word you say, and watching every facial expression that comes across your face. How you deliver the Down syndrome diagnosis to those parents could be a matter of life and death, literally.
When our son Noah was born, my wife’s OB/GYN’s first words to us were “I’m so sorry” followed by “Would you like some antidepressants?” We were scared, anxious, and worried; the last thing we needed to hear from a medical professional was “I’m sorry.” And my wife certainly didn’t need antidepressants.
But our story isn’t unique. In fact, I’ve heard from countless parents of children with Down Syndrome whose OB/GYN did a poor job of communicating to them their child had Down syndrome, or even worse tried to convince them to “terminate the pregnancy.” Sadly, a lot of parents take their OB/GYN’s advice and abort their child. You may be aware that approximately 92% of children diagnosed with Down syndrome are aborted. This shouldn’t happen. Doctors, like yourself, have to do a better job of delivering a Down syndrome diagnosis. You have to give parents true, accurate, and up to date (not inaccurate and outdated) information about Down syndrome.
The stakes are to high.
A Reminder Of The Oath You Took
When you became a Doctor you were required to take the Hippocratic Oath which states:
“…That I will lead my life and practice my art with integrity and honor, using my
power wisely…That above all else I will serve the highest interests of my patients through the
practice of my science and my art…”
Using your power wisely means that you understand that as a Doctor and the first person to tell a new parent that their child is going to possibly be born with Down syndrome that you have tremendous power, and it’s been famously said that “With great power comes great responsibility.” And that responsibility is toward your patients (both in, and out of, the womb), to whom you have sworn to serve their highest interests.
With that in mind, I wanted to share a few thoughts on how to deliver a Down syndrome diagnosis to parents that will allow you to use your power wisely, and serve the highest interests of all your patients:
5 Ways To Properly Deliver A Down Syndrome Diagnosis
1. Say “Congratulations,” Not “I’m Sorry”
It doesn’t matter if the child is diagnosed with Down syndrome prenatally, or after birth (as in the case of our son,) always congratulate the parents for the child they have conceived, or the child that was just born. As I mentioned, my wife’s OB/GYN’s first words to us after our son was born was “I’m sorry.” Don’t say that.
This is the birth of a child, not a funeral. And the birth of a child always calls for congratulations.
2. Keep A Positive Demeanor
I know you’re nervous, you’re about to have an awkward conversation with some parents, and you have no idea how they’re going to respond to what you’re about to tell them, but please stay positive. After all you’re talking about someone’s child. You’re the professional and the parents are going to follow your lead.
If you look like it’s the end of the world, they may think it is also. But it’s not. “It’s” a beautiful new baby who is longing to meet his or her new parents. So please, please, please get over your fear and nervousness, put a smile on your face, and tell them that their new little one has a surprise for them, then help them understand what causes a child to be born with Down syndrome. This is important as some mothers think it’s their “fault” that their child has Down syndrome, and that they may have done something wrong to cause it.
3. Tell Them There’s Never Been A Better Time In The History Of The World For A Child To Be Born With Down Syndrome
There’s a good chance that you don’t personally know anyone who has Down syndrome, and an even better chance that you aren’t up to date on the current information about what life is like for children with Down syndrome. But you should be. I’ve heard stories about OB/GYN’s telling parents that children with Down syndrome suffer, won’t ever be verbal, are sick all the time, and have all sorts of health problems. Sadly, most of these OB/GYN’s are telling their patients this information based on information that is decades old from when they were in medical school. What’s even more heartbreaking is that this inaccurate information causes many of their patients to make a fear based decision (aborting their child) that they regret for the rest of their life.
I hope that you would never tell an already scared, worried and shocked parent this harmful information. The truth is, there really has never been a better time in the history of the world for a child to be born with Down syndrome. Now, there are countless resources available to help people with Down syndrome reach their full potential. Today people with Down syndrome go to college, have careers, drive, get married , are public speakers, become actors and actresses, play (multiple) musical instruments, live independently, and live meaningful and productive lives.
In fact, American Journal of Medical Genetics recently published a study that showed that parents of a child with Down syndrome have a more positive outlook on life because of their child with Down syndrome. In other words they are happy (not sad and depressed) because of their child with Down syndrome! I recently told a reporter from Headline News that there’s no reason to be sorry for us, or for Noah…and I meant it!
It’s important that you paint an accurate picture of what their new child’s life could possibly be like, and an accurate picture is a hopeful one. When you took the Hippocratic Oath you swore that you would use your power (and influence) wisely, so be sure you don’t unwisely and irresponsibly use this power and influence to scare someone into making a decision to end the life of their baby; especially if the information you are giving them to base that choice on isn’t accurate. Give them hope, not fear.
The blood of that little baby is on your hands if you try to tip the scales towards fear and worry and in turn cause them to “terminate their pregnancy.” Remember, you are to use your power wisely, and serve the highest interests of your patients. That little baby in the womb is indeed your patient. Be sure you take good care of him or her, that little baby’s life depends on you.
4. Let Them Know You’d Be Happy To Connect Them With Another Family Raising A Child With Down Syndrome That Can Answer Their Questions And Give Them A Window Into What Life Is Like Rising A Child With Down Syndrome.
When you tell a parent that their little child has a chromosomal abnormality they are going to be scared. They will more than likely cry. That’s ok, it’s a normal thing to do. They are mourning the loss of the imaginary child they made up in their mind, the child that didn’t have Down syndrome. As they morn the loss of that imaginary child, they will also begin to construct a new child, their child with Down syndrome.
Those parents will probably be like me, and not know much about Down syndrome. They may begin to imagine their new child based on their inaccurate information about Down syndrome, and this will cause them a lot of unwarranted fear. People are scared of the unknown, and Down syndrome will likely be an unknown for a lot of your patients receiving the diagnosis.
It’s your job to help make some of the unknown, known, and by doing so hopefully remove some of their fear so they can walk forward in hope.
One of the best ways to help new parents learn about Down syndrome isn’t by giving them an outdated pamphlet, and telling them to go home and “think about it.” It’s by introducing them to another family who has a child with Down syndrome and allowing them to see what it’s like raising a child with Down syndrome, first hand.
My wife and I are currently expecting another child, and are using a different OB/GYN this time who actually asked us if she could pass our contact information along to one of her other patients who is expecting a child with Down syndrome, to which we quickly and excitingly responded,”Yes!”
I would encourage you to do the same. We have a Facebook page where lots of families share pictures and stories of their children with Down syndrome, and we also have a website where we share 60 second videos of our son Noah just living life and doing things that typical kids do.
If you don’t know a parent locally that has a child with Down syndrome I would encourage you to reach out to your local Down Syndrome support group. They would be thrilled to give you a parent contact. In addition, you can email me and I’ll happily provide you with my information that you can give out to any of your patients. My wife (who is a pediatrician and the mother of a child with Down syndrome) and I would love to talk to any of your patients anytime about what it’s like rising a child with Down syndrome, and I mean that.
As a OB/GYN your knowledge about Down syndrome only goes so far. The way you present the diagnosis to parents will largely be swayed by your opinions, experiences and stereotypes of people with Down syndrome, and the facts about Down syndrome. It’s ok to be honest about that with your patients.
You’re a Doctor, not God. You aren’t expected to know everything about everything, so please take that pressure and burden off of yourself.
The best thing is to tell new and expecting parents that you don’t personally have a child with Down syndrome (assuming you don’t) but that you would like to connect them with a parent who does. Tell them it may help them to see that raising a child with Down syndrome is not as scary as they may think.
I think connecting an expecting parent of child with Down syndrome to a parent of a child with Down syndrome is the most responsible, helpful and honest thing you can do to help a parent who has just received a Down syndrome diagnosis. In fact, I’m convinced that if every woman who’s baby has received a prental Down syndrome diagnosis could hang out with our son Noah for just thirty minutes the abortion rate for children with Down syndrome would be almost zero.
5. Don’t Suggest That The Parents “Terminate The Pregnancy” Because The Child Has Down Syndrome
I can’t tell you how many times I’ve been told by another parent of a child with Down syndrome that their Doctor continually suggested (to the point that they felt pressured) that they “terminate their pregnancy.” This suggestion goes against the Hippocratic Oath which you swore to abide to. It ‘s not a wise use of your power and influence, and does not serve the highest interest of your patients; either the baby in the womb who is your patient and whom you are suggesting to their parents that they murder (abort / terminate) him or her, or the mother who is also your patient whom you are suggesting murder their child and live with the guilt and regret of their choice for the rest of their life.
As I’ve already mentioned, as a Doctor you have a tremendous amount of influence with your patients, and they are looking to you with trust for guidance, hope, and encouragement. Regardless of what your views are on abortion, and rather or not you are “pro-life” or “pro-choice,‘ (I’m fully, 100%, always for life by the way) I’m sure we can agree on the fact that selectively aborting a child based solely on the fact that they have three copies of their 21st chromosome as opposed to two is wrong. In fact, some states have even made it illegal to abort a child due to a genetic abnormality.
So please don’t plant the seed of abortion in your patients mind simply because there’s a chance their child is going to be born with Down syndrome. Instead, plant seeds of hope, encouragement…and life.
Abortions never solve any problem, rather they create a multitude of many more.
The Future Of Down Syndrome Is In Your Hands
As an obstetrician the future of children with Down syndrome is literally in your hands. You have the ability to help parents receiving a diagnosis of Down syndrome to understand that there truly has never been a better time in the history of the world for a child to be born with Down syndrome. You need to let them know they aren’t alone, and that having a child with Down syndrome is nowhere near as scary as they probably think that it is.
As you give them current and up-to-date information on Down syndrome, and help connect them with other parents raising children with Down syndrome with a smile on your face and “congratulations” on your lips you are helping to replace some of your patients fear and anxiety with hope and truth. And that’s a great thing.
Parents like me love our children, and honesty wouldn’t change one chromosome on them. Really, we wouldn’t. But even more than that than I believe that all humans are created in the image of God, are fearfully and wonderfully made, and deserve a chance at life.
As an OB/GYN I believe you also love life, and no matter how many times you deliver a baby, or hear a child’s heart beat on a sonogram you never get over the wonder of new life. I hope this letter helps you to have that same sense of wonder for all new life, no matter how many chromosomes that tiny little life has.
Thank you for all that you do, and for playing such a big role in a family’s life. Parents never forget the birth of their children. For the rest of my life I’ll never forget the way our OB/GYN handled the birth of our son Noah. Those two words “I’m sorry” will forever be ingrained in my mind.
I hope that your patients remember different things about you.
I hope they know you value all human life. That you love their child. That you love them. And that true love doesn’t count chromosomes, it sees beauty in all life.
Use your power and influence wisely Doctor. Babies like my son are counting on your to save their lives from the most dangerous place in the world for a child with Down syndrome, their own mother’s womb.
Rick Smith (Noah’s very proud father)
For additional information be sure to check out our New Parent Guide To Down Syndrome, and this excellent list of “What To Say To Someone Who Has Received A Down Syndrome Diagnosis” and please be sure to share this letter on your Facebook Timeline, Pinterest, Twitter and other social media channels so that as many OB/GYN’S as possible will see it, and hopefully change the way they deliver a diagnosis of Down syndrome to expectant parents. If you have a blog you have my permission to link to this post in a post of your own, and please be sure to enter your email address in the box below to stay connected to our story!
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