Breaking Down Preconceptions

Before I start my post, let's be clear about one thing: I did everything that I was supposed to do. I consulted a doctor before I started to attempt to conceive. I was on pre-natal vitamins before. I stopped drinking alcohol, cut out caffeine, no tuna, no soft cheeses, no lunch meat all before conceiving. I never smoked nor took drugs nor medications not okayed by my doctors. I even left the room if someone lit up. I started all of this before conceiving. My primary care doctor told me if I was planning to have a baby, I should start acting like I was pregnant for the two months preceding our first attempts. So that is what I did. Yet, my daughter was born with multiple, complex congenital heart defects.

As we've discussed before, I sometimes feel responsible for the Dancing Queen's conditions. It is highly likely that her myriad of problems stems from her micro-deletion of chromosome 22q11.2. (There is an extraordinarily high correlation between conal truncal heart defects like DQ's and the deletion, but there has been no direct connection showing definitively that the 22q deletion causes heart defects.)  But, most CHDers don't know why they have defects.

That bears repeating: There is no explanation (yet) as to why most CHDs occur!

And so when I learned recently that a college entrance exam study aid stated that most CHDs are caused by the mothers drinking or using drugs, I got very upset. A CHDer noticed this egregious error, wrote the publisher, and the error will be corrected. But the problem is bigger: like the origin of the misunderstanding.

Generally, people believe that only mothers who do something wrong will have children with defects. Afterall, that is why I blamed myself for so long. And that is why so many heart moms feel guilty at least for a while. This societal belief that only "bad" moms have sick babies is why CHD awareness is hindered. Until CHD is personal, nobody believes it is possible.

The head in the sand mentality has to change. CHD does not discriminate based on race, on income level, on nationality. Yes, there are things you can do that will increase the odds of your baby developing a CHD. But, even if you do everything right, there is still a 1 out of 100 chance your baby will be born with a broken heart.

What's worse is that routine screening is not yet done for CHDs in the majority of states and many children go undiagnosed until it is too late. And despite the prevalence of CHD, parents are not taught the warning signs before bringing their newborn home. This has to change.

You may wonder why I care. Afterall, my daughter was diagnosed and she is receiving care. But I feel that all babies are important. Not one should be lost because much of the medical community is living 50 years in the past where children simply died from their CHDs and it didn't matter if the CHD was detected. Today, the sooner the CHD is detected, the much greater chance of survival. There is no reason why a child with a hole in their heart should go undetected into their teen years when it is too late to fix the hole and they are suffering from other uncurable, life-threatening diseases caused by the hole. No more children should be lost because nobody looked to see if there could be a problem.

I hope you will join me in helping to change this egregious oversight. First, if you are pregnant (or know someone who is), request that the newborn have a pulse ox done before leaving the hospital. The doctors aren't necessarily going to hear any heart problem and ultrasounds can even miss that your baby only has half a heart. The pulse ox does not detect CHDs, but it is an inexpensive, non-invasive tool that should warn doctors a problem may be present and more tests need to be done (it determines the percentage of oxygen in the baby's blood and should be over 97%). A pulse ox doesn't hurt and is found in every hospital. For a baby, it looks like a bandaid, but not quite as sticky.

Second, learn the warning signs. If your baby is blue at all, demand a pulse ox. I've heard stories of nurses telling new moms that some newborns just turn blue and it is common. Your baby should not be blue! If they are blue, they are not getting enough oxygen and could have a CHD. By blue, I mean even if their lips, fingers, or toes are not pink, but purplish in shade. DQ's hands, feet, and lips were very blue when she was born and she still gets that way sometimes (like today). If your baby tires very easily while eating or sweats while eating, that could be a sign of a CHD. Rapid breathing is also a sign of CHD.

Third, write Health and Human Services Secretary Sebilius and tell her you want pulse ox mandated for all newborns. She is considering rules that would implement a pulse ox for every newborn in the country, yet doesn't believe we care enough to save babies' lives. I care! If you care too, here is a link to a letter you can customize and email to Secretary Sebilius: http://www.writesomeone.org/en/component/mtree/recommend-newborn-screening-for-critical-chd.

Finally, pass this information along. The best way to prevent the loss of these children is to educate their parents. Parents are the frontline defense for their kids. When you pass this information on, if the mother or father shuts down and doesn't want to think about it, ask them one question: What is the life of your child worth? We're trying to save lives.

Rainy Tarmac

We stood in the rain for at least an hour, waiting. The excitement was palpable even if the we were cold to the bone. This is what we had worked toward through endless practice sessions over weeks.  We were not going to let a little rain stop us. We all knew the songs, knew them better than any songs we'd done before. This was to be the most important concert ever. I held my flute so tight, waiting for the moment to play.

There were maybe 30 or 40 of us 5th and 6th graders in the band.  All of us had only been playing for 6 to 18 months. We stood in front of the crowd of elementary school students. They all had umbrellas, but with our instruments, we couldn't hold them. So we stood in the rain and waited.

Then his plane landed. We started to play as he came out. He was going to hear us play. I could barely move my fingers because of the excitement, fear, and awe.

Then it happened.

He was surrounded and bundled away. He never heard a note we played. The car took off. We stood there stunned. Wondering what we had done.

Later, we learned that there had been a bomb threat. The president was much too important to permit to stay on the base. Yet, an elementary school's worth of children stood on the tarmac in the rain during the threat and word one was not uttered. They never bothered to move us.

That was the day I started to grow up. I learned what politics and government were all about: saving politicians, not saving the future.  As I drove by that tarmac again tonight, lit up waiting for a plane to land in the rain, I thought about that day and realized nothing has changed, except the faces of politicians who sacrifice the children to save their own jobs.

Screaming at Local Governments

So, this is one of those times I just want to scream at the government. To be precise, local government.

Local governments make me want to scream frequently because they infringe on First Amendment rights more than any other branch of government.  I think it is because most local governments don't have the knowledge or resources to understand what they can and cannot do when it comes to speech and assembly.

In my neck of the woods, a local government has gone to extremes to prohibit speech and assembly. The speaker is repugnant, but the censorship is worse. If we don't protect the speech of the lunatic fringe, soon all of our speech will be censored. If we try to stop the hate speech, we just fuel the fire of the supporters to react more aggressively.

I could say so much more on this topic. I believe in free speech.  It is one of the most important civil liberties we have in this country. But, I don't have the time today to pontificate further.  Instead, I ask you: Who would you be without free speech?

Opinions

I have a lot of opinions. Opinions about politics, about government, about the law, about healthcare, ethics, morality, duty, and so much more. These are the things I thought I would write about when I started this blog. The problem I have is how to state my opinions and not run counter to my professional life. It's not to say that I represent clients who are diametrically opposed to my personal opinions and beliefs, but I never know who the next client may be and I don't want to take a position that could hinder that relationship or my representation of that potential client. That leaves me in a bind.

It is safe to say that I tend to have liberal views. I don't like political parties though. I think allegiance to a political party rather than a core set of beliefs is causing our country to only care about elections instead of governing and care about popularity rather than what is right. Somehow politics is no longer about compromise, but about giving prizes to the people with the most money spent on the topic at hand and lambasting the people who didn't put enough money on the table. It's not right. Any of it!

Unfortunately, I don't have answers. But, I can say this. I believe in taxes. I don't believe in wasteful government. I don't believe in earmarks that skip the majority vote process. I do believe in providing the country a strong military. I do believe in providing our men and women who fight for us with the proper equipment. I don't believe we should continue to concentrate all of our resources based upon terrorism, but based upon our national interests. Really, terrorism is not new and is not going to be stamped out through killing and violence. I do believe in free speech. I do believe in the power of the people. I don't believe corporations are people. I do believe we now live in an oligarchy dressed up as a democracy. I don't believe that is right.

I am scared by what I see in the news. I am scared that unions are being destroyed so that corporations can make more money. I am scared that making money is more important than saving lives. I am scared that education is being sacrificed to cut deficits, but taxation is not considered because the ultra-rich are willing to pay millions in lobbying rather than pay taxes to cover education.

I believe we are better off living in a society and by doing so are responsible for each other. I don't like it when people do nothing and get a check because I work hard. But I don't believe all people are like that. No child deserves to go hungry. No mother should have to chose between seeing their children grow and putting food on the table for them. We will only continue to lose our grip on power in this world if all our children are not given the chance to succeed, if they are all not fed, and if they are all not provided healthcare. I don't understand why our priority is on lowering taxes and not on future generations. Without the children, none of this matters.

Long Term Gain v. Short Term Pain

I had several conversations with TRex this weekend regarding long term gain from short term pain.  It got me to thinking about our government.  I really think if our government thought more like a parent and less like a child, we would be better off.  Let me explain.

TRex is 4.  In October, he came to us requesting to play sports.  He didn't care what sport, he just wanted to start playing sports because his cousins played soccer, hockey, and baseball.  The difference of course is that the Car Guy loves sports and has always played them, so he got his boys involved in sports from a very young age.  The Mad Scientist could care less about sports and with as busy as we are with the Dancing Queen's many, many doctors appointments and therapy sessions, adding extracurricular activities for TRex was not a priority in our home.  Anyway, I digress.

TRex wanted to play sports, so we signed him up for swimming lessons and soccer.  Swimming lessons seemed obvious because TRex has always loved the water and we want him to continue to love it.  We want him to be safe.  Soccer was the only "sport" we could find lessons that fit our schedule during the winter.

Of course, TRex is 4, so when said lessons started, he didn't want to do it.  Swimming scared him . . . A LOT.  The teachers make him do scary things (another aside, TRex is pretty much scared of everything these days).  The swimming teachers have the audacity to make him try to jump into the pool.  They take him out of his comfort zone.  TRex doesn't like this, yet taking TRex out of his comfort zone is exactly what I want for him. I don't want him to be scared of life.  I want him to face his fears in a controlled setting, where I know he will overcome them and, hopefully, gain some self-assurance.  After all, being a parent is about making the tough decisions for our kids, making them endure short-term pain for the greater good in the long run.

This weekend, TRex was especially adamant in not wanting to attend swimming lessons.  It had been a really hard week for him with his family separated due to the Dancing Queen's hospitalization.  And in his mind, he never believes that the Dancing Queen will come home when she is hospitalized.  So, Saturday comes, Ma and Papa were going to bring TRex to swimming, then soccer.  TRex fought me about swimming.  They were going to make him get on the driving board and jump into the pool.  That was too scary.  He couldn't do it without Mommy in the pool.  So, all through the morning, I explained to him that I couldn't be in the pool with him and that he had to face his fear because it would be better in the long run.  I told him that sometimes we have to do things we don't like to do or are scary because they will help us be better people and help us grow up.  I also told him that if he got scared, all he had to do was remember that Mommy was always with him; remember that the kisses and hugs I gave him couldn't be washed off and were still there even in the pool.  It worked because he knows I am there for him and will not let him down.  He enjoyed swimming (and soccer, but that is not an issue because they don't make him jump into water well above TRex's head).

Now you are wondering what does this have to do with the government.  Easy.  Too often, our government officials make decisions based upon their fear of the short term pain.  They act like children and don't want to do things that will hurt today, ignorant of the damage such shortsightedness will have on the future.  Instead, our government should be acting like parents, looking at long term goals and how to reach them.  If we constantly give into our fears of jumping into the pool, we will never learn to swim.  Likewise, if we are constantly afraid of the short-term consequences of fixing government, then we will never have a solution.  Continuously cutting money to education or cutting funding of health care for everyone might save money today, but how is it going to help our future?  I don't see how we can expect to maintain our status in the world if our children are not properly educated and unhealthy.  Expecting people to pay for it all themselves is unrealistic and only adds to the damage being done.  Why do we live in a society if we don't want to work together?  I don't have the answers, but we need to figure something out quickly. And if the government thought more like a responsible parent, rather than a child, we would probably be better off.