Will your doctor tell you if your newborn has Down syndrome?

Here and there, I use something that has been googled and led to our blog as a blog post, and this is one. 

Will your doctor tell you if your newborn has Down syndrome?

The simple answer to that is yes.  There are, however, a variety of ways and circumstances in which your doctor will choose to tell you.

Here is how we were told:
Kamdyn was born via emergency c-section, because she was turned sideways, and her foot was dangling into my cervix.  If my water broke, she was in danger of coming down and compressing the umbilical cord, thus cutting off her blood and oxygen supply.  In what felt like a whirlwind, we were prepped for surgery, and Kamdyn was born into the world.  I did not understand it at the time, but there was this eery pause and silence right after she was born.  No one was saying anything, even though I was asking, "Is she ok?" through tears of joy and relief that it was over, and she was here.  I finally got a "Yes, everything is fine."  I was not aware at the time, since I was still in the midst of surgery, but Brad told me that the events that took place in the OR over the next several minutes struck him as odd.  Apparently, there seemed to be an awkward secret that was floating around the room, but we were unaware.  Brad told me later that the pediatrician, who was present for the birth, and the nurses gathered in a side room, where they briefly spoke.  Brad thought this was odd, but he did not think much of it.

When we were out of recovery and back to our room, Brad leaned over to me as I lay in my hospital bed and quietly said, "You know, she kind of looks like she has Down syndrome?"  I thought the statement was COMPLETELY crazy, and I did not pay it a second thought, because I never imagined it could be true.  We had some visitors throughout the evening and nothing was mentioned by any of our nurses or doctors. 

The next morning, our pediatrician's office sent the on-call doctor to perform the routine examination of Kamdyn.  I specifically remember when he looked at her palms.  We had visitors in our room at the time, so I was trying to give attention to them, while watching the exam.  The way he looked at her palms and under her tiny hat at her ears struck me as odd.  When he was done, he asked our visitors to wait outside.  That was when my stomach dropped, but strangely enough, I still did not have Down syndrome on my mind.  When he said, "We suspect that your baby has Down syndrome", it was literally shocking.  So shocking, in fact, that I had almost no reaction.  I think my lack of reaction almost caught him off guard, but I could not react.  Those words were a fierce blow, and yet had little meaning, because I had never given much thought to Down syndrome.  It took days before the finality and meaning of Down syndrome would really sink in. 

Later that second day, the news of Kamdyn's heart murmur actually had a more immediate affect on me.  I think that may have been the first time I actually broke down and cried.  That was when I was hit with this realization that she may be sick or in for a difficult road.

This is a picture of Kamdyn under the billi lights, treatment for jaundice. 
I have mixed feelings over how we learned of Kamdyn's diagnosis.  On one hand, I am grateful that our children were able to meet Kamdyn in a joyous and happy environment during that first night. 

But, afterwards, knowing that all of our nurses, who were in and out of our room constantly, as well as our doctors, knew that our new baby had Down syndrome was slightly embarrassing and a little painful.  All in all, I feel that we were told in a positive way, where the doctor was sensitive to this unexpected news, yet respectful of our child.  In the end, that is all I care about. 

There are many, who have not been as fortunate.  There are doctors who are unprepared to deliver such news.  I have heard many horror stories of rude, insensitive comments made to shocked, new parents.   

Brighter Tomorrows and NDSC have physician guides that offer suggestions on how a diagnosis should be delivered. 

In rare cases, there are babies who may go months without a diagnosis.  Personally, I am not sure how this is possible, but from time to time, I hear of case like this.  The plan of action would be no different in this type of situation than it would if you knew the second day like we did.  You would follow up with your pediatrician for any health issues or concerns and suggestions for any specialists, and the baby would be enrolled into a local Early Intervention Program that would assist the child and family with any developmental delays the child may be facing.


And if you are one of those people who have happened upon our little corner of the world here, because you googled this subject, I just want to, first of all, tell you congratulations if you are pregnant or just had a new baby.  If you are suspecting your baby, whether still in uetero or newborn, may have Down syndrome, I will tell you as someone who has walked that road that IT WILL be ok.  Everything will be ok.  It is normal, natural, and understandable to cry, be afraid, be sad, even mourn the baby you thought you were having.  So many of us were there, and it DOES get better.  Kamdyn is the light of my life.  And today, 20 months later, I wouldn't change a thing.  If you can't say that, it doesn't mean your ill-equipped or a bad mother, as I felt I was in those early days.  It means you're normal, and you need time.  Seek support, because it's out there.  Find out some more about what Down syndrome really is, not just a list of possible medical concerns, because a baby or child with Down syndrome is not going to have every item in that list and some have none.  Google some other blogs about families that actually have a child with Down syndrome and find out how normal, that's right I said normal, their lives are. 

Read this post about misconceptions that people have of people with Down syndrome.  Read this and see some of the many things that people with Down syndrome can do.  Check out this post about some of the things that I love about Kamdyn.  And make sure you look at these beautiful children who happen to have Down syndrome. 

Again, congratulations and thanks for reading.