Posts Tagged ‘Disability’

Five CHD Questions: Why?

May 13, 2010

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;

Mother’s Day 2010

May 7, 2010

From StorytellERdoc:

It happened again last week. Among the hustle and bustle of a crazy shift. A pre-hospital radio call from an ambulance team that nobody ever wants to receive.

“We’re bringing you a child in cardiac arrest.”

Heart Moms (and mothers of all Sick Kids) go to the wall for their children. Not occasionally, not when needed, but constantly. Traditionally, we’re supposed to grow up, move out, have our own family, and then take care of our parents as they age.

But for some of us, that won’t happen. So our mom may spend her entire lifetime in “Mom Mode”. When the child has a disability, moms are instinctively more protective and worry more. Their children’s lives may not be what they imagined or hoped for, but good moms adapt and hang in there.

Then, time stood still. From two hallways away, I heard the haunting sound. A sound that I knew was coming. A sound that is played over and over in my mind for days after an event like this. A sound of profound anguish. A sound of utter disbelief. A sound of infinite pain.

A mother’s cry.

All our mothers live in fear of their worst nightmare: The thought that they might have to bury their child. With sick kids, that fear is with her every day. 99% of the time when morning comes and the child is late in getting up it’s just that the young’n didn’t set his/her alarm… again. But when a Sick Kid’s mom opens the bedroom door, her breath catches in her throat. What if…?

When the doctor comes out of surgery, what if…?

No mother should ever have to bury their child. It’s unacceptable, it’s unnatural, and it just ain’t right. But some mothers do, and others live in constant fear of that sad event. And yet you hang in there, and you stand by your child – forever.

Thank you.

“You can’t work here.”

June 17, 2009

Today we shift from one viewpoint to the other: From the “You can do it!” attitude expressed by Eliza to the “You don’t fit in.” attitude of a major corporation that has a problem with those of us who don’t conform to their image.

Riam Dean was hired by Abercrombie & Fitch’s (A&F) main store in London, and presented with a copy of the Employee Handbook. In the Handbook is A&F’s “Look Policy”, which very carefully describes the appearance that they want their employees to present. A&F Staff are to present a “natural, classic American style,” the policy insists. Although all employees dress in Jeans and a Polo shirt, Riam was allowed to wear a cardigan sweater to disguise her artificial arm.

Sweater? Disguise an artificial arm? I smell trouble….

The trouble didn’t start until a few days later when A&F’s “Visual Team” showed up. The Visual Team are the Enforcers – they monitor A&F stores and employees to make sure they all meet the perfect standard. Since Riam’s sweater is not standard issue, they began to demand that it come off. Riam stood firm – after all, she did have permission to wear it – but before the hour was out, she had been reassigned. To the stockroom. Because she was violating the Look Policy.

Riam quit A&F and she’s suing them for disability discrimination. (Good! Go get ’em, Riam!) But take a look at what she says in some of the court documents:

It made me feel as though she (the store manager) had picked up on my most personal, sensitive and deeply buried insecurities about being accepted and included. Her words pierced right through the armour of 20 years of building up personal confidence about me as a person, and that I am much more than a girl with only one arm.

Now, replace the phrase “only one arm” with “a heart defect” and read it again. For a lot of us, it hits close to home.

A Congenital Heart Defect (CHD) is a “hidden disability” – usually the general public can’t tell that we are disabled. I know the physical signs of Cyanosis and what to look for – the blue fingertips, clubbing, slightly bluish tinge to the lips – and even I miss the signs sometimes. And not all of us are Cyanotic, so we are truly hidden. Unless there is a lot of physical activity involved, you may never know there is anything wrong with us. So if we are ever told “You don’t fit in here,” it seems to be more of a shock to the system.

Riam was… withdrawn and sad. I had never known her like this. She has a totally positive ‘can do’ attitude to everything, yet she seemed broken by this.

Although we can’t explain discrimination, CHDers can’t let it shake us. We have to internalize it not as a problem that we have, but as a problem the discriminator has. Our life may seem to be a real roller coaster ride  at times, but it is still our life. Someone who tries to discriminate against you beacuse of the way you look, your color, your gender, or your health is attempting to control your life. This is not acceptable, not even for a moment.

“I don’t want their money,” Riam said after refusing a settlement that would bind her to a non disclosure agreement. “If I accept their money, it means I can’t talk about it. And they will treat somebody else like that in the future again.”

“We’ve got something to say, and we ain’t leaving ’till we say it.”

September 25, 2008

Our participation at the Social Security Administration (SSA) Policy Conference went well. There were a total of 33 people there – physicians, Social Security employees (Both from the Washington Headquarters and various field offices around the country) advocates, and patients.

The Wheels of Government turn slowly. On April 16, 2008, the SSA published in the Federal Register their intention to consider revisions to the criteria they use to evaluate claims involving cardiovascular disorders in adults and children, and invited comments on their plans. After gathering information and data, they will decide if the regulations need changing. If they *do* decide that changes need to be made, they will then make the changes… and publish the changes in the Federal Register, inviting more comments. It can make you want to throw up your hands – or throw in the towel – but it is the way things are done. The policy makers want to make the policy as fair as possible: Open enough so that someone with a legitimate disability can qualify, yet tough enough that it’s not an easy way to live off the public dollar. They are also looking for guidance in determining “Unidirectional Listings”… that’s Government-speak for situations which would mean instant qualification for benefits.

Adult Congenital Heart Association (ACHA) President Amy Verstappen, Dr Karen Kuehl, Barry Meil and I were there to make sure the SSA representatives understood that Congenital Heart Defects are not “childhood diseases.” Adult Cardiologists and Pediatric Cardiologists are trained differently. Pediatric Cardiologists are trained to recognize and treat heart defects, while the large majority of adult cardiologists (90%+) are only trained to recognize and treat acquired heart diseases: the kinds of heart problems that develop through age or that could be accelerated through a bad diet or bad habits.

We were also armed with letters from seventeen concerned ACHA members and five Adult Congenital Heart Defect (ACHD) doctors. “There is no cure for having half a heart,” one of the letters reads. “The best way to explain how it feels is to have a person run around the house holding their breath. This is how I feel all the time.”

Dr. Karen Kuehl, the director of the Washington Adult Congenital Heart Center and a professor at George Washington University School of Medicine, reminded the policy makers that with some of the more severe defects, “it’s not a given that the heart has four chambers, two great arteries, and is located on the left side of the chest.” Dr. Kuehl argued that when an adult with a Congenital Heart Defect is evaluated for Disability, we do not need to be evaluated by a Cardiologist who may not understand what he or she is seeing. The evaluation should be done at a specialized center, using the Bethesda 32 guidelines. (The 32nd meeting of the American College of Cardiology, held in Bethesda, Maryland, issued new treatment guidelines for adults with Congenital Heart Defects. It is usually referred to as “Bethesda 32″.)

One of the issues that came up was the testing method being used. While both adults and children must have a blood oxygen level below a certain number to qualify, a child can be tested by a Pulse Oximeter, while an adult must undergo an Arterial Blood Gas. Anyone who has ever had a Blood Gas can tell you they aren’t fun! The blood is drawn from an artery in your wrist – which is fairly deep and usually requires a lot of “digging around” to find – and then it is placed in a plastic bag full of ice and rushed to the lab for immediate analysis before the sample deteriorates.  If it does deteriorate before testing… well, you just have to grin and bear it while another sample is drawn. I’m in full agreement, getting the standard changed to allow adults to submit a Pulse Oximeter reading would be a relief.

Amy Verstappen is an excellent speaker. She’s enthusiastic, energetic, and she knows her subject. (Amy has Congenitally Corrected Transposition of the Great Arteries (CC-TGA), so in this case she lives her subject matter.) Amy described a heart as a house: it has walls, doors and windows (valves), pipes (blood vessels) and an electrical system. Defective hearts have problems with the floorplan – hallways that lead nowhere, windows that are sealed shut, bad and leaky plumbing, and wiring so bad that occasionally the lights flicker. And like a real house, repairs can make the house livable, but it is still fundamentally flawed.

I do not know when the SSA will decide on the rule changes, if any; it may be a full calendar year before we know anything. Despite the name on the office door, the ACHA is working for both adults and children on this issue. ACHDers who qualify for Disability Benefits should receive them, without having to fight both the government and the medical field for an accurate evaluation. Children making the transition to adulthood need to be able to access doctors trained in their special needs when the time comes for their first adult evaluation. And a specialized health center is not a gateway to public funds – they can actually help reduce the level of disability by presenting treatment options.