"We're Safe, the Baby Does Not Have Down Syndrome" & My Break-Up With The Today Show

Ugh. I watched it. I thought about it. I watched it again. I thought about it some more. There are elements of this segment on The Today Show that I enjoyed. Then there are the ones I just can't stomach. As Joey's mom, there is a part of the segment that I just cannot watch without crying and without mourning the way our world celebrates when they find out that their child doesn't have Down syndrome. That was the part that stuck with me.

All photos in this post by Nat.

On January 28, 2013, The Today Show ran a segment about a couple who is having their first baby and opted to do the new MaterniT-21 Plus testing to find out if the baby has Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18) or Patau syndrome (Trisomy 13).  The parents to be said that even if the baby did have Down syndrome, they would keep the baby, but they wanted to do the testing so that they could be prepared and could plan and see additional specialists if needed. 

The segment talked about the mom's "advanced maternal age"-- she will be 35 when the baby is due in June and they used that as an additional reason to do the testing. 

I recently had a long talk with a friend about the MaterniT-21 Plus testing and about the prenatal testing that we chose to do with both of our children. With Tommy we did the typical ultrasound and the quad screen testing. With Joey an early ultrasound showed that he had hydrops around his body and a septated cystic hygroma around his head, which led to our doctors advising us to have a CVS done to try and find out what genetic conditions might be causing his complications.  With Joey we knew at only 13 weeks into the pregnancy that he had Down syndrome. Only at the time, the Down syndrome diagnosis was very secondary because we were being told through a large part of the pregnancy that he would never survive because of the cystic hygroma, the hydrops and then eventually his congenital heart disease and heart defect. 

For our family, prenatal testing did just those things that the couple on The Today show spoke about.  We were able to see specialists (oh- and did we ever- I had 3-5 appointments per week when I was pregnant with Joey).  He had multiple fetal echo cardiograms performed. We had multiple stress tests each week.  We had weekly ultrasounds. We were as prepared as we thought we could ever be before he was born, except we had almost zero understanding of the joy this little boy would bring when he was born. We had no idea the people he would inspire. We had no understanding of what his little life would mean and how his fighting spirit would end up defining our lives in a richer and much more meaningful way.

For us, the prenatal testing was both incredibly stressful and helpful at the same time. The stress of knowing that all of this was going on inside me to our baby was so intensely difficult because I had no control and could not do anything to help him. At the same time, it gave us a lot of time before he was born to accept that Joey had Down syndrome and that he might have some medical issues. Looking back, the greatest fears were the fear of the unknown. The fear of what it would mean to have a child with Down syndrome. The fear of what society would think of Joey. Would people think it was my fault because I was at an advanced maternal age? What would it mean? How would Joey's diagnosis affect Tommy? Our lives? 

Looking back I wish someone could have just told me how amazing it would all be. I wish they would have been able to tell me that Joey's smile would fill my heart with amazement and joy. That the sound of his laughter would cure any heartache in the world. That each of his milestones would make me far prouder than of any accomplishment I could have ever imagined. That the life God was giving us so far exceeded any child I could have ever dreamed up on my own. That is what I wish a prenatal test would have told me.

In the meantime, if we were to ever have another child we would definitely do prenatal testing again. Now that we know our children are at risk for congenital heart disease we would definitely have echo cardiograms. Now that we have a child with Down syndrome, we would test again so that once again we could be as prepared as possible. For that, we appreciate the knowledge that prenatal testing can provide. 

What I don't like and what I don't respect, however, is the name that the company, Sequenom, chose for their new testing--MaterniT21 Plus. I find it disgusting. I find it insulting. I find it completely abhorrent that this company would use this "ironic" twist in its naming of its new prenatal testing. In my mind it is completely disrespectful of parents, moms, children and individuals with Down syndrome.  As you may know, Down syndrome is the occurrence of a Trisomy (T) of the 21st chromosome (thus- T21). While the test screens for 3 different trisomies, the manufacturer chose to highlight that it tests for Down syndrome.  Why? To prey on people's fears? I don't know the "marketing" theory behind, all I know is that I find it reprehensible.

Pros and Cons of Prenatal Testing

For any woman or family considering prenatal testing there are pros and cons to both sides. Some of those include:

Pros

• Earlier knowledge of possible problems may help parents prepare for the care the child may need.
• Early knowledge of certain conditions may be an advantage in case emergency treatment is necessary (such as when our doctors were going to remove some of the excess fluid built up around Joey's body).
• Early knowledge of certain conditions may give parents time to meet and find specialists (such as our cardiologist in Akron and at the University of Michigan- we knew both of them before Joey was born).
• Early knowledge may be an advantage in that doctors may choose a delivery method that minimizes the risk to the mom and infant (Such as Joey being delivered via C-section 3 weeks early due to the excess fluid build up and the concern about his growth be restricted).

Cons

• CVS and amniocentesis carry some risk of miscarriage (We had to travel out of town for Joey's CVS to help reduce the risk--there is a school of thought that doctors who perform a CVS more often have a lower miscarriage rate).
• The MaterniT-21 Plus testing can confirm only 3 of the trisomies, but does not test for nearly 50% of the other chromosomal conditions.
• Testing is not as precise as many parents believe them to be.  It does not guarantee that problems do not exist.
• Testing may indicate a problem where none exists or may not detect a problem, giving false security.
• Testing does not cover all disorders or diseases.  Many diseases have complex forms that cannot all be covered in a generalized test.
• Testing raises ethical issues with some using prenatal testing as a means to decide to terminate even when there is never a 100% guarantee whether or not a child will survive a pregnancy with or without health issues.

Back to The Today Show segment and why I simply can no longer turn on my local affiliate NBC channel and ever watch it again. About halfway into the segment (you can view the entire segment here) Matt Lauer says to the couple, "Let's get right to the good news." 

This is when my heart sank. Surely, I thought to myself... surely, they are not actually going to announce on national television that their baby does not have Down syndrome? 

Let me repeat that again, Matt Lauer says to the couple, "Let's get right to the good news."

The mom-to-be goes on to say, "We are safe. The baby does not have Down syndrome."

And then I cried. This is the very reason people fear having a child with Down syndrome. This is the very reason I feared having a son with Down syndrome. 

The "good news" of this particular segment--- which had claimed that the testing would allow the parents to prepare and line up specialists-- the "good news" was that their baby did not have Down syndrome. 

The "good news" that The Today Show celebrated on January 28, 2013 was that this couple's baby-to-be will not be like our precious son, Joey. 

For that, I'm out. Good-bye Today Show. I've been enjoying Good Morning America just fine. 

For that, I'm more dedicated to trying to help advocate and educate the world that having a child with Down syndrome is not some kind of dark cloud. 

For that, I'm hoping that someday when we turn on the television we will see a couple rejoicing the gift that God is giving them a child.  That we will see a couple or a mother rejoicing that her baby has an extra special gift-- an extra chromosome.

For now, I wonder, is it too much to ask others to not celebrate on national television that their child does not have Down syndrome?