I have moved…

Thank you for stopping by, but I have decided to move over to wordpress.com with my blog.  My previous posts have all been moved, and I do hope that you will take a moment and visit me at my new home.

CoffeeCupReverie

What is Tetralogy of Fallot?

When our daughter was born, I did not know how common congenital heart defects are, but I now know that 1 out of every 110 babies in the United States is born with a heart defect of some kind. The cause of congenital heart defects is unknown, and in most cases, the heart has already formed improperly before pregnancy is discovered. 

Our daughter was diagnosed with of tetralogy of fallot with pulmonary atresia and atrial septal defect.  It took me weeks to be able to remember those terms without looking at the sheet of paper the doctors had given my husband and me that described her condition. Thankfully, the doctors treating her were all excellent at explaining the situation in terms that we could understand and follow.

To better understand tetralogy of fallot, one must first understand some of the basics of how a healthy heart functions:

• A healthy heart has four chambers:
  • Right atrium which is where oxygen-poor blood is received into the heart from the body
  • Right ventricle which pumps blood from the heart to the lungs
  • Left atrium which receives blood from the lungs
  • Left ventricle which pumps blood from the heart out to the rest of the body

The atriums are the top chambers and the ventricles are the bottom chambers.

• The pulmonary artery carries blood from the heart to the lungs. It starts at the bottom of the right ventricle and then splits into two branches which go to the left and right lungs. The pulmonary artery sits in the right ventricular outflow tract.

Tetralogy of fallot is actually a combination of four different defects that are found together in the same patient. In most cases, patients will have three of the four defects, and only in rare cases will a patient have all four. Those defects are:

1. Ventricular Septal Defect (VSD) – this is a hole in the wall that separates the right and left ventricles
2. Pulmonary Infundibular stenosis - An obstruction or narrowing of the right ventricular outflow tract
3. Overriding aorta – In most cases, this means that the aortic valve develops in a way so that it is connected to both ventricles rather than only to the left ventricle as it should be. In about 25% of patients, there will be a right-sided aortic arch, which means that it formed to the right of the pulmonary artery instead of to the left as in a normal, healthy heart.
4. Right ventricular hypertrophy – this means that the muscle surrounding the lower right chamber becomes overly thickened because of the added work load from trying to maintain a supply of blood to the body

Normally the left side of the heart only pumps oxygenated blood to the body and the right side only pumps deoxygenated blood to the lungs, but with a VSD, blood passes from the right side of the heart into the left side resulting in oxygen-poor blood being sent out to the body.

Atrial septal defect (ASD) is similar to the ventricular septal defect, only it is a hole in the wall between the left and right atriums.

Quite simply, for us tetralogy of fallot with pulmonary atresia and atrial septal defect meant that our daughter’s heart had two holes (ASD & VSD), was missing part of the main pulmonary artery (thankfully her right ventricular outflow tract was normal), and the right branch of the pulmonary artery was narrow. She also had a slight right aortic arch, but did not have the overriding aorta. This combination meant that the amount of blood leaving her heart and reaching her lungs was reduced, and the blood leaving her lungs (oxygenated) and the blood heading to her lungs (deoxygenated) was mixing inside her heart. Then the poorly oxygenated blood was being sent back out to the rest of her body, resulting in her turning blue from head to toe.

All too often, babies born with this problem do not present any signs during their short stay in the newborn nursery, and therefore they get sent home. This results in weeks or months passing before the problem is diagnosed, and in that time, irreparable damage can occur to the brain and internal organs due to prolonged oxygen deprivation. Thanks to one very observant nurse, the problem with our daughter was detected only an hour after birth, so there was no long term damage done to her body from oxygen deprivation.

When our daughter was 11 days old, she underwent her first open heart surgery. Her surgeon performed a “full repair” to correct the tetralogy of fallot by inserting an artificial conduit to act as her pulmonary artery, patching over the VSD, and partially stitching up the ASD. He also corrected her right-sided aortic arch. The ASD was intentionally left partially open to act as a “pop off valve” until the blood started flowing the proper way through her heart. As time goes on, and back pressures cease to be a concern, the hole should finish closing itself off.

The terminology “full repair” is a bit on the deceptive side. While the problems have be addressed and our daughter’s heart has been “fixed” she is not cured.  There is no cure for any congenital heart defect. She will have to have additional surgeries and procedures on her heart throughout her life, and she will always have to have a cardiologist.

February 7-14, 2015 is National Congenital Heart Defect Awareness week.  The goal of this week is to raise awareness of CHDs, because most people do not know the severity of the problem.  I didn’t know until it became a part of my life.  Here are some important facts that you can pass along to help raise awareness:

• Congenital Heart Defects are the #1 killer of children.  In fact, more children die from CHD each year than from all forms of cancer combined.  Depending on where you get your numbers from, 1 out of every 100, 110, or 125 babies born will have a CHD, and this year approximately 40,000 babies will die before their first birthday.
• There are roughly 40 different CHDs, and the cause for the vast majority of them is unknown.  In some cases, the cause is genetic, but in most cases, the cause is unknown. 
• There are no preventative measures that will keep CHDs from happening.
• About 50% of children with CHD will require at least one invasive surgery in their life, but there is no cure, no permanent fix.  Once you have a CHD, you will always have it, and will require the care of a cardiologist for your entire life.
• CHD research is extremely underfunded.  According to The Children’s Heart Foundation, only about 1% of all funds received by the major private funder of cardiovascular research goes to any pediatric research.  Without funding, research is slow going, and without research there is no hope for understanding the causes of CHD or of finding a cure.

I saw a post this morning that compared CHD to snowflakes because each child presents their own unique anatomy.  Every VSD is a different size and shape.  Every defect is just as unique as every snowflake.  I like that, it goes a long way to expressing the enormity of the problem.  Please help spread awareness in any way you can.  As we spread the word, the chances of finding a cure increases!

Proofreading is Important!

The internet has opened up countless opportunities for writers to get their work out in front of readers.  From the person creating a blog to share his or her interests with the world, to professional news outlets reporting on current events, the internet is filled with writing. 

The proficiency of individual writers differs and it is understandable that a person with no training who is writing for a personal blog, or on Facebook, or Twitter will make varying degrees of grammar mistakes.  These individuals should be commended for their efforts, regardless of their writing skills.  We live in a society built on free speech, and that means that if I cannot stand to read what you have written, either because of the subject matter or for the grammar mistakes, I can look elsewhere.

On the other side of the coin are the many different professional news outlets.  It is unacceptable when these professionals publish content that is painful to read due to grammar mistakes, misspelled or misplaced words, and incomplete thoughts.  These are supposed to be trained professionals who have been to school to learn the proper ways to write a news story.  Grammar and punctuation should be reviewed and mistakes corrected.  Sentence structure should be evaluated.  Word choice should be precise and above all, sentences need to express a complete thought.

A couple of nights ago, I was browsing my Facebook feed, and came across a link to a news story posted by one of our local news outlets.  It was the most painful reading experience I have endured in months.  The article totaled 273 words, (as a reference, this post is 273 words so far) and in that 273 words, without digging hard, I counted fifteen writing mistakes.

The first sentence, “People in the neighborhood where the crime happened, about what they remember that night.”  What did the people do?  Did they talk about what happened? Did they cry about what happened?  Did they laugh about what happened?  The writer does not tell the reader.  Because the sentence does not express a complete thought, it is actually not even a sentence, but a fragment.  The meaning of the end of the sentence is just as imprecise.  I am pretty sure they talked to the reporter about what happened the night of the crime, but as written, it could refer to  either the night of the crime or the night neighbors talked to the reporter.  Perhaps, “People in the neighborhood where the crime happened talked about their memories of that night,” would have been a more accurate sentence.

Other problems with this particular article include:

• Run-on sentences.  “But three men followed them here to their home at the time and that was more than 20 years ago.”  This really should be broken into two sentences.
• Extra spaces between words in a sentence.  This is a minor thing, but still something that proofreading the article would have caught before it was published.
• Use of a hyphen in the middle of a sentence for no reason. “But people who have moved into the neighborhood since the crime-have heard the stories.”
• Incorrect word usage.  Just one example is, “getting his just deserts today.”  I’m pretty sure that the writer meant desserts, but again that’s not what was published.
• Missing words again, “I would say that he was a fine and the person…”  He was a fine what?

As a writer, I know that mistakes happen.  Every writer has to review what they have written and revise and edit the piece.  There is editing for content, during which the writer has to make sure that they completely convey what it is they are trying to say.  There is also grammar editing, which is making sure that you have used correct punctuation and verb tense, etc.  No matter how proficient of a writer you are, or how adept your editing skills may be, there will still be times when something slips past a critical examination. 

Regardless of who you are, you will be judged for the writing that you put out for the general public to consume.  If your writing is filled with mistakes or is hard to read, people will question your intelligence.  When you are writing for a professional news outlet, those judgments apply not only to you as the writer, but also to the company you represent.  It is a fact of life, and I’m not saying that it is right or wrong, it just is. 

There were multiple comments about this particular article that pointed out the need for editing and proofreading.  In fact, there were more comments directed towards the need of a proofreader than there were about the content of the story itself.  And yet, there was one person who decided it was appropriate to call me a bully for suggesting the need for proofreading and editing.

According to Wikipedia, “Bullying is the use of force, threat, or coercion to abuse, intimidate, or aggressively dominate others.”  Apparently we now live in a world where constructive criticism is considered bullying by some.  What does that say about our society?  Nothing good, but that is a subject for a different post on another day.

What about you?  Do you think that it is inappropriate to expect a professional news outlet to publish higher quality pieces than the amateur writer?  Or does it really not matter?  Is it okay that more and more often the amateur writer posting on a blog has superior writing skills than many of those who are paid for their writing?  I welcome your comments on the subject.

The World Continues to Spin

On January 6, 2014, the state of Florida began issuing marriage licenses to same-sex couples.  As a resident of Florida, it saddens me that it took this long for the legal system to finally allow all couples the basic right to celebrate their love and commitment to each other, regardless of sexual orientation. 

Florida is the 36th state to allow gay marriage, and with the 19.9 million people currently living in the state, 70% of the nation’s population now lives where same-sex couples can legally be married. The road leading to this day was fraught with political and religious fighting and narrow-minded arguments against this “assault on the sanctity of marriage.”

Below is a brief timeline of the events that led us to where we are today.

• In 2008, the voters of Florida passed a constitutional amendment banning any marriage that did not consist of “one man and one woman.”  The ballot measure passed with 62% of the vote.
• In 2009, James Brenner and Charles Jones were married in Canada.  After moving to Florida, they were considered single under Florida law.  The couple filed a lawsuit challenging the state’s ban on gay marriage because the ban prevented Brenner from listing Jones as his spouse when enrolling in the state’s retirement plan. 
• On August 21, 2014 U.S. District Judge Robert Lewis Hinkle found the ban to be unconstitutional and issued an injunction preventing the state from enforcing said ban.  He also issued a stay of injunction to allow for three other cases to be resolved that were awaiting writ of certiorari before the Supreme Court, plus 91 days.   In the following months, arguments were made on both sides of the issue. 
• On October 6, 2014 the U.S. Supreme Court denied writ of certiorari to all three of the other cases, thus starting the 91 day countdown per Judge Hinkle’s stay of injunction.
• On December 16, 2014, the law firm Greenberg Traurig , who represents the Florida Association of Court Clerks, advised the clerks of the court across the state that only Washington County was allowed to issue same-sex marriage licenses because that was the only county specifically listed in the case Judge Hinkle ruled on.  They further advised that any other clerk of the court would be subject to criminal prosecution for issuing marriage licenses to same-sex couples.
• On January 1, 2015 Judge Hinkle clarified that his order applied to all 67 counties in the state, putting an end to the debate.
• On January 6, 2015 same-sex couples across the state rejoiced as they were  finally allowed to marry.

There are still those who oppose the idea of same-sex marriage, and several counties have ceased conducting wedding ceremonies for any couples at their courthouses altogether, as a way to avoid having to officiate a same-sex ceremony.  Florida’s Attorney General, Pam Bondi, is still pursuing appeals at both the state and federal levels. But, as Judge Hinkle stated in his ruling:

The institution of marriage survived when bans on interracial marriage were struck down, and the institution will survive when bans on same-sex marriage are struck down. Liberty, tolerance, and respect are not zero-sum concepts. Those who enter opposite-sex marriages are harmed not at all when others, including these plaintiffs, are given the liberty to choose their own life partners and are shown the respect that comes with formal marriage.

At the end of the day, the world is still spinning, the sun is still shining, and a subset of our population is finally allowed to choose who they wish to spend the rest of their lives with and receive the same benefits of that commitment the rest of the population enjoys.  Congratulations to all of the newlyweds!