Wednesday, January 30, 2013

"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:

  • 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).
  • 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? 

Thursday, January 24, 2013

Super Joey's 2013 Hospital Visit & A January Full of Ickiness

It would seem that Joey has a bit of an issue with Croup.  Flashback to New Year's Eve 2010 and as we were leaving the house to go to the Winking Lizard for a few wings with Tom's brothers and our sister-in-law from New Jersey and it seemed like Joey wasn't quite himself. We were gone for just two brief hours when a phone call came from the babysitter, "Um, Jen. I think there's something wrong with Joey."

I knew it.  I knew when we left something was going on. We left the wings and beer, picked up Joey and headed down to the ER at Children's Hospital. I thought maybe he would get some fluids and we would head home, but no such luck. This was before his heart surgery to repair his ASD and we ended up ringing in 1/1/11 in room 7220. I will tell you this--a children's hospital is a lonely and quiet place on New Year's Eve and New Year's Day. Luckily after some breathing treatments and steroids and a couple days in, we were able to bring him home. 

The next time he had croup, Tom and I were in California and once again it hit him hard and like a ton of bricks. I knew when our sitter had called up one of my best friend's, Kelly, to help her that things must have been serious. We were literally across the country and were coming home the next day and there was no way to get home any faster. Kelly and LoLo took Joey into the doctor, got him some good medicine and took amazing care of him until we could make it back home.

This time it hit just as fast. On Thursday night he was up with that barking croup cough and on Friday I took him into the doctor where he was given a steroid. We thought he was better over the weekend, but Sunday morning we knew something was wrong. He wouldn't eat. He wouldn't drink. He wouldn't sit up. He just wanted to lay on the floor. I don't know about you, but I'm pretty much the same way when I'm sick (which I am-- Influenza A-- we all had the flu shot, but it still hit).  That being said, since Joey doesn't really "speak" just yet, it's hard to know what to do when he is sick. We also worry about his congenital heart defect and leaky mitral valve and worry that any illness may put too much pressure on his heart, which is what will eventually lead to him having another heart surgery someday down the road.

I thought we might head into the ER, he might get some IV fluids and then we would be able to head home. It's funny how I always think that is what will happen.  It never does...

They drew blood. Took swabs. Tested for strep, tested for flu, tested for RSV--all of which came back negative. Hooked him up to some IV fluids. The Resident and Attending Doctor were baffled. After 8 hours of being on IV fluids and not getting better, and his white blood count coming back at alarmingly high levels, the doctors decided to admit him and started to talk about doing a spinal tap to rule out meningitis.

Would you know it- we ended up back to our old room- Room 7220. I couldn't believe it! What was weird was how excited I was to be in the same room. There was something about the familiarity of it that made me feel more comfortable and I hoped that Joey would feel comfortable.

After about 20 hours on IV fluids our little man started to perk up a little bit and ate a cracker. That was when they decided to not do the spinal tap. Whew!!! From there on out it was more blood draws, more IV fluids and more waiting it out.  Super Joe and I stayed together in his room and watched the Season 3 opener of Downton Abbey

We still don't know what Super Joe had, but by late Monday night his white blood count had come back down and we were able to pack him up and take him home to his own bed.

After a couple more days of rest he was back to himself and we still don't know what he had, but we were glad Super Joe was back to himself.

And then it was....Tommy's turn!  

Photo: Tommy and I were a little sick this weekend.  Upside was hanging in our pjs all weekend!!

Poor Tommy.  I think he slept for almost 24 hours in a row.  It's interesting because when he doesn't want to eat or drink and wants to sleep all the time we don't rush him down to the ER. I would have to say that is because of his ability to tell us how he is feeling and where it hurts.  That is probably the biggest difference between when he and Joey get sick. Because of Joey's history we are a little jumpy and because he can't verbalize how he feels, he is a tougher case to treat. 

Both Tommy and Joey went on Tamiflu last week after being exposed to the flu and knock on wood- they are both doing much better. Me, on the other hand, caught the flu and have been down and out since Monday night. I'm praying the boys continue to improve and don't get it because the real flu is brutal! We all got the flu shots and my doctor said on Tuesday that the flu shot should at least help with the longevity and severity of it. Now we are all on Tamiflu and I'm trying to isolate myself from everyone. 

In the meantime, I have a lot of alone time to read and catch up on things.  Among the things I caught up on was this interesting article about a mom who created a visual chart/map of what it is like to be the parent of a child with special needs. The article appeared on The Huffington Post and was called "Gabe's Care Map"  which was Christine Lind's effort to describe to physician's what her son's care entails. I think her map is amazing! 

Having a child with special needs requires a lot of organization, a lot of patience, a lot of drive....pretty much a lot of everything.  And at times, it requires a lot of everything you don't really have. Extra energy. Extra time.  All those things we seem to seek in just our regular every day lives. Christine Lind's map is an excellent illustration of what it takes.  I explain to people that Joey averages about 5-7 appointments per week, but until you see it the way Christine illustrates it-- it is hard to understand just what this world can look like:

special needs children

Her blog at Durga's Toolbox is devoted to "embracing special needs parenthood with courage, compassion and joy".  It's one of my new favorites and if you are the parent of a child with special needs, you may also enjoy it.

I would be remiss if I didn't mention the waiter, Michael Garcia, who works at Laurenzo's in Houston, and stood up for an adorable little five-year-old, Milo, who has Down syndrome.  A family at another table moved tables so they wouldn't have to sit near Milo and his mother and then continued to make comments about little Milo.  Mr. Garcia finally had enough of it and asked the family to leave.  You can read the full story here.

My favorite part of the story is that Mr. Garcia never told Milo's mom what was going on because he wanted to protect her and Milo's feelings from what was going on.  Having been a waitress before I know what a stressful job it can be trying to keep everyone happy.  It's that prior experience waiting tables that always makes me that much more appreciative of good and kind servers. 

Are you a generous and kind tipper to good service? I hope so!

Is your family staying healthy this new year? I hope so!

Anyone else down with the flu?  I hope not!

Thursday, January 3, 2013

The Ethics Of Therapy For Children With Down Syndrome - Breaking Up Is Hard To Do, But Getting Dumped is Worse

Happy New Year! A fresh start! A new opportunity for growth and improvement. That is what my mind should be thinking.  That is the spirit and energy I should be approaching this new year with.  Instead, all I can think about is this, 2013-- a new year and a new deductible. First there is the $2500 individual deductible that Joey usually clears by mid-February. Then there is the $5,000 family deductible that is mostly cleared by him around April/May. Then there are the therapy limits.

Our insurance limits his speech therapy to 20 visits per year. Not even once a week is covered and so right around the time we hit the deductible we start paying out of pocket for his speech therapy because it is no longer covered after visit 20. This is a choice we have made. We have decided that trying to help Joey to speak as well as he can will give him the best possible opportunities to be able to communicate in the greater world as he gets older. It will help him learn. It will help him have relationships. It will help him help himself and keep him safe, which is one of my greatest worries for Joey. We are fortunate to have found a wonderful speech therapist who loves Joey as much as he loves her. He has started to make many more sounds including "g" and "k". His first word was "Da Da" and he uses it purposefully when he sees his dad. His second word was "Car"-- oh the irony.  Of course his second word was "car." Tommy and I work hard daily to encourage and get him to say "Ma Ma." It will come. Does he have Apraxia? It is possible. His therapist and I have spoken about it and it may be one of the speech challenges Joey will have to overcome. 

Working on the stairs! 
Physical therapy is also limited to 20 visits per year. The struggle I have is that for a 2 1/2-year-old-boy who cannot walk and cannot talk, we are impeded by these insurance mandated limitations on his coverage.  Occupational therapy is also limited to 20 visits per year. Last year was our first full year of therapy and we blew through our coverage without keeping track and without realizing just how costly it would end up being once we had to pay for it out of pocket for the last four months of the year.

This year we are trying to be better planners.  We are sticking with speech therapy every week despite the out of pocket expenses. We are trying to do physical and occupational therapy every other week in an attempt to stay within our insurance confines.  On the alternating weeks I am using my Down syndrome resource books from Woodbine and the lessons from therapy to try and re-create and practice what we learn during our priceless sessions. 

We had finally found a wonderful Occupational Therapist (our 4th) who Joey loved and who was very close to home.  That is the other thing about therapy.  Even though the sessions last 30-60 minutes it is usually a 30-60 process of getting out the door and to therapy and then doing the same to get back home.  Overall, one therapy session usually entails about 2-3 hours from start to finish.

Our first OT experience was in a clinic where they did OT, PT and ST all at once. Joey was completely exhausted and overwhelmed. We went through 2 OT's in that clinic. We then broke out all the therapy sessions into individual ones and we met our 3rd OT.  This OT was a nice person, but the day she used the R-word during our session and then denied using it when I asked her to please not use it in front of us, I knew we would probably need to move on.

Then came OT #4. This OT was very enthusiastic and very encouraging.  Joey seemed to really like this OT. Back in December I explained to this OT and to the office that starting in 2013 we would have to reduce our OT visits to every other week in an effort to stay within our insurance coverage. 

Breaking up is hard to do, but getting dumped is worse. Our OT and the office told us that if we did not come every single week to therapy they would no longer serve as Joey's therapist. They said that they had changed their office policies and now would be requiring every patient to come every single week. 

"But what if your patient's insurance won't cover those visits?" I asked. I was told that those patients would have to pay out of pocket if they wanted to continue to be seen. 

I cried. I was hurt. I thought that our therapist and the office cared about Joey's progress. I pushed. I questioned. I argued. I asked our therapist to advocate for us, but the therapist stood firm on this new office policy. 

Is this ethical? I don't know. What I do know is that it sure didn't feel very good and something about it just didn't really feel right.  I've been dumped before, but my child hasn't and that is the worst kind of heartbreak a parent can experience. 

Meeting Sunny- Aunt LuLu and the girls' new puppy.
I put my chin up and started interviewing new therapy centers. The thing is- as a parent you have to work around your other children's schedules, your child in therapy's schedule-- it's some kind of incredible Rubik's cube to sort it all out. To be kicked out a program and spot you thought was working for your family is brutal.

I called our therapist and said that we had a Christmas present for the therapist that we would be dropping off.  I took the gift and Joey in so we could say good-bye and move on in 2013. The therapist asked us to please keep them updated on Joey's progress. We tried to take the high road and move forward, but keeping them updated is probably not going to be on our list of priorities.
Kisses from G-pa.

Has your child ever been dumped? Have you ever been kicked out of therapy? Is it ethical for a therapist to require you to attend every week even if it is not covered by insurance?