Saturday, June 30, 2012

In the News - June 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of June.

AUDIO indicates an audio clip
BLOG indicates a blog post
EVENT indicates a scheduled event 
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

BLOGRewards of being a caregiver?

Margaret Cho:  'I don't want a retard' baby
BLOG Sorry
BLOG Being Retarded
BLOG Dear Margaret Cho...
BLOG More Apologies
Twin Girls with Down Syndrome and Does God Only Give Parents What We Can Handle?

9 Important Developmental Milestones for Your Child with Special Needs

WA Man with Down Syndrome Earns Black Belt
BLOGThe R-Word Reporter
BLOG What Position Next?
VIDEO Player with Down Syndrome brings passion to game
Wheaton North Embraces Prom King with Special Needs
BLOG New great read for young adults.  Oh, an the main character rocks her extra chromosome
VIDEOEnd the R Word
BLOG Dear You
Tim Harris Serves up Food - And Hugs!
BLOG Why You Tube could teach your child a valuable lesson about life
Tim's Place restaurant takes unique approach thanks to special owner.
People with Down Syndrome can be Jerks too.
BLOG Why my kid will forever stink of fish
In Historic moment, Gov.  Signs Prenatal Testing Law

Down Syndrome Doesn't Slow Teen Rodeo Rider
Former Denver Broncos Receiver Ed McCaffery, Valor Christian host Down Syndrome football, cheer Camp.

Hernando Man with Down Syndrome celebrates independent living
Tim's Place, Restaurant Run by 26 Year old man with Down Syndrome, Serves Hugs with Lunch

Bridget Brown, a 'butterfly for change'

Who wouldn't want a child like this?

Mothers of children with Down Syndrome find strength and support in one another

Summer Camp gives those with Down Syndrome a chance to dance
VIDEO Riley, Student with Down Syndrome, Hula-Hoops like a Pro at Talent Show
VIDEO Down Syndrome:  One Family's Decision (Part 1)
VIDEO Earlier, Easier Down Syndrome Test (Part 2)

The End of the R-Word in Israel

Down Wit Dat hosted the fourth T-21 Blog Hop on June 21.  Don't miss our next one on July 21!

We also started our own Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

...And that's the news.  Keep the stories and information coming!

Wednesday, June 27, 2012

(Almost) Wordless Wednesday: The Eye of the Beholder

That rare chestnut "Beauty is in the eye of the beholder" doesn't get any more real for me than this post.  Yes, I am biased, but those are some good lookin' kids doing toddler things.

My daughter has a fierceness and intensity that I know all too well.  She's an incubus really, a clone.  In a lot of ways she is a very small version of me. She is an amazon... albeit a tiny one.

However, the last photo and the video are two of the most beautiful things I have ever seen;  Wyatt showing off his balance and his ability to commando crawl (and negotiate trajectory).  He has worked so hard for months, overcoming rebellious muscles that did not want to do what his twin sister's did so naturally.  I see him using these skills to explore his world and my heart feels as if it will burst.

Wyatt and Zoe (15 mos)

Intense Zoe

Playful Wyatt
Wyatt on his rocket

Thursday, June 21, 2012

Get Bent

Every family has their own sayings and euphemisms.  It's just the way it goes.  Team Logan has our fair share of inside jokes, phrases and memes as two adult geeks and one burgeoning one could possibly have.  One such "Loganism" is the phrase "don't get bent out of shape".  Meaning of course, to not get upset over something trivial or nonsensical.  Sean and I use this one a lot, usually in jest.  It's a colloquialism that has served us well over the years;  a handy little phrase that keeps us from being too serious about things that truly don't matter.  We can observe the issue, make note of it, even make a commentary on it.  However, the edict is there:  don't let whatever it is warp your sensibilities or get you riled up.  It isn't worth it.

I've had my self control tested a lot lately.  Unfortunately, that would be life.  Most of it, as the saying goes, is not worth getting bent out of shape over.   As time has gone on, I have learned that most of what life throws at you belongs in this category.  There is a lot to be concerned about these days, that is true.  However, you have to really select wisely as you'll quite easily worry yourself all the way to the grave.  I don't spend too much time thinking about things like politics or the economy or what my neighbours are up to as I have more important things to concern myself with.  I do worry about things like my house, my little family and especially my kids.  When it comes to things that are actually worth getting bent out of shape over, they have to top the list.  I will do it too, this contortion of configuration.  You can bet on that.

Some time ago, I wrote The Big Tell about sharing your child's diagnosis with others.  Now that I am looking back and have more time at this special needs parenting thing under my belt, I wish I would have said a few things more.   I've had more than a couple instances in the last few days where someone new has learned of my son and his extra chromosome; I wish I could say that they all went well.  Sadly, this is not the case. 

One of the most common responses to the statement "my son has Down syndrome" is generally well meaning, but actually quite offensive. 

It is "sorry". 

My immediate response is a curt "don't be", because, quite frankly, both participants in the conversation have nothing to be sorry about.  It is not shameful in a "sorry my dog pooped in your lawn" or catastrophic in a "sorry, I didn't realize it was loaded" kind of way.  You didn't give it to him either so there is no possible way that it is your fault.  There is no sorry.  I am not sorry I had him, I am not sorry he has an extra chromosome and I am certainly not sorry that my son is a wonderful huggable little guy that can light up an entire room and has inspired thousands.  Nope.  Not sorry.  You shouldn't be either, so relax.

I ran across a new one the other day and it caught me totally by surprise.  A lady asked me "how will I know that he is understanding what I say to him?"  I really had to pause a minute after that one to choke down the fourteen immediate responses that were, at best, less than charitable.  It was really difficult to keep from saying things like "you'll know from the explosions" or "symptoms may include a mild headache" or "your nose will glow", but I didn't.  Instead I came back with "same as you would any other child...?" and was rewarded with an "oh yeah!"  a few minutes later when he smiled at something she said.  Sometimes they have to learn on their own. 

There is often an accompaniment to The Sorry:  The Somewhat Concerned Blank Look.  I know this face, I have to wear it at work sometimes.  The eyebrows go up and the head tilts to the side as the person waits for what should obviously be an unbridled tsunami of wild emotion.  I will tell you now that it ain't happening.  I do get emotional over my son, but not about my son.  There is a distinct difference.  It is kind of insulting to see and made even more awkward as once again, the look is meant usually with good intentions.  There's another saying I'm reminded of here, something about the road to hell...

The most obvious example of something to get bent out of shape over is an issue that I'm sure some people are "sick" of hearing about.  The Big R, The R Word, whatever you want to call it.  "Retarded". It's funny that the word sick gets mentioned as that is exactly how I feel when you say it.  Sick, as if you'd punched me in the solar plexus.  I've heard it all too:  "I didn't mean it that way", "I used it correctly", "language evolves, it doesn't mean that any more" and so on and so on and so on, ad infinitum, ad nauseum.  It never ceases to amaze me how many different ways people can justify bad behaviour and bigotry.  Language does evolve, so evolve dammit!  Find something else to describe the helplessness that you feel when you lock your keys in your car or how ridiculous your dog looks in a hat.

As a parent of a special needs child, I run into a lot to get bent out of shape over.   It's very difficult sometimes, to keep your composure in the face of what is obviously some new fresh manifestation of ignorance.  I try and take that extra breath, to stop myself from perpetuating the hurt with more and instead to use the situation as a teaching experience.  Sometimes it goes very well,  sometimes it doesn't.  Even if it doesn't offer immediate results, it gives the person on the receiving end the chance to go away and think about it.  If that is all you accomplished with your talk, then you already have a victory, my friend.  That person may never change either, but you can say "at least I tried."

Before I leave you this week, I have one more Loganism I thought I'd share.  It will be of particular interest to those who perpetuate ignorance, who refuse to believe the worth of a person lies beyond their chromosome count, who persist in perpetuating hatred.  To those people I extend a cordial and simple invitation:

Get Bent!

Join Down Wit Dat on the 21st of Every Month!

Saturday, June 16, 2012

Frick and Frack and an F-ton of Frackin' Fricatives

Not many people will probably remember/know this, but Frick and Frack were a comedy skating team that started performing in the Ice Follies in 1936.  They wore lederhosen and although indistinguishable to most people, they each developed their own tricks, including the "cantilever spread-eagle" created by Frick and a rubber-legged gag designed by Frack.  They were so well loved that their names became slang in many languages.  To call two people "Frick and Frack" nowadays (aside from being a bit of an anachronism) generally is to call two people inseparable.   Sometimes it is used in a not very flattering way to mean two goofballs or stooges.  My twins are a lot like that;  inseparable, indistinguishable to some people at first, both working their own tricks and being completely silly the entire time.  They are delightful and adorable and as funny as hell.  All that is missing is the lederhosen... but unless those come in super absorbent, I wouldn't recommend they wear leather pants.

We've had a flurry of development in the last week;  it's been hard to keep up with it all to be honest.  Both kids have developed their own unique tricks, most of which have been repeated many times for our amusement.  I'm not sure if Zoe is emulating her brother's pattern of  "nothing, nothing, nothing... MASTERY!" for different things, but it has sure seemed that way.  Within two days she had found her nose, learned two signs, said a new word and tried to dress herself.  Of course I was at work and missed a lot of it, but I got the news from Sean.

The nose thing has been a long time coming for both of them.  Early on when they would grab our noses, we'd make honking noises.  (We are that family).  With Wyatt, it got to the point where that was all he wanted to do when I held him.  My nose was actually sore from the squeezing of little hands.  A couple of weeks ago I stopped making traffic noises when they would grab my schnoz and instead started sing-songing the word "nose".  At first it confused both of them as that was totally not the reaction they were expecting.  Zoe took it one step farther the other night when I asked "where's Daddy's nose?" and she made a grab for the paternal proboscis.  "Where's Zoe's nose?" was the inevitable next question and we were both delighted as she grinned and pinched her own honker.  That grin wore off shortly thereafter as she tired of doing it over and over again to the squeals of her crazy parents, but for a few minutes there, we were all about le nez.

Last Sunday was a banner day for our little Miss as she not only said her first English word (other than Dada).  It was "up" and used correctly.  Sean was getting the babies ready and turning to Zoe who was anxiously bouncing in her crib, said "Zoe, up?".  According to him, she stretched out her arms and repeated "UP!  UP, UP, UP!" and flashed him her thousand kilowatt smile when she was picked up.  I was at work and missed the whole thing, but I got the proud parent phone call shortly after to tell me the good news. 

I got another call a few hours later when at suppertime, She let Sean know that she wanted more applesauce by making the sign for "more" by banging her hands together.  It's no big secret that Zoe is a screamer.  It's become even more pronounced lately when she Tarzan yells/trumpets/air raid klaxons to get your attention or to chide you for not understanding what she wants.  She's easily frustrated as her understanding of language is much higher than her capacity to express it.  I started really reinforcing the sign language last Friday as I was alone with the babies for most of the day.  "More", "milk", "mama", "dada" were re-introduced, with an emphasis on "more" and "milk".  At supper that night, Sean asked "You want more?" and she made the sign and hollered, but settled down a bit once she saw that he was preparing more food.  It was a bit of a superstar moment.  That night, once I was home from work and we were both getting them ready for bed, I asked "Milk, Zoe?" and made the sign.  I was astounded to see her frantically sign "milk" with both hands and get ready for a feed.  It was awesome.

One of her more comedic moments came a day later when she pulled a baby shoe out of the basket in the living room and toddled over to where Wyatt and I were sitting on the floor.  She first held it out to me and babbled at me a bit, then lifted her foot while reaching down to try and put the shoe on it.  She naturally stumbled forward and had to reset herself, but immediately reached down to put the shoe on again.  And again.  And again.  She looked like a drunk trying to figure out how to put their boots on the right feet to go home.  She was laughing along with me with occasional barrages of staccato Zoe-se.  She must have done this for a good four or five minutes before finally babbling in disgust and thrusting the shoe at me as if to say "You do it!".  I held it up and asked "what do you want me to do with this?"   She responded by lifting her foot up for me to see while perfectly balancing on one leg.  I started laughing uncontrollably at this point and tears started to come out of  my eyes a second or so later when she landed on her butt with a decided plop.  She never did get that shoe on.

Wyatt has made some distinct inroads as well.  As an addendum to our A Smooth Road post, he has connected "up" and "down" with an action, in this case raising and lowering his arms.  Before it was only in the context of the song, now he will respond to "up" and "down" as commands by raising and lowering his arms appropriately.  It  is very cute as he will reach forward and grab your fingers and then smile and laugh as he goes "up!".

Last week sometime, as we were putting the kids to bed, Wyatt said "Zazazaza".  Now, like any other vocalization that any of our kids have done, we said it back to him.  It had the desired response as he giggled maniacally and did it over an over and over again.  Like any other sound, with any other kid, we tried to attach a meaning to it.  "Zoe?"  we asked him.  "Za-za-za Zoe?"  More giggling (and a little shouting from Zoe).  It was just another random moment in the life of pre-verbal toddlers.

You can imagine our surprise then, a few days afterwards at a speech-language assessment when we were told that little sound was pretty significant.  The 'Z' sound, as it turns out, is a pretty hard sound to make; they were surprised that Zoe could make similar noises.  That sound, along with sounds like "V", "S" are known as fricatives and are pretty difficult sounds for little people to make.  In fact, children do not typically master these sounds until age 4.  I nodded and smiled at the time, but you have to admit, that is pretty cool. Wyatt is also the master of the raspberry, an action that the late great George Carlin called a "bilabial fricative".  Sadly, George was incorrect;  there is a bilabial fricative, but it is closer to the regular fricative than a bronx cheer.  (BTW:  he can do these too).  What he is actually doing is a linguolabial trill, which is also pretty significant.  Fast, slow, metered, responsive... this kid has a "thhhhpppppttthhh!" for every occasion.  Which is awesome.  As is the "click" he can do with his tongue and the roof of his mouth.  He's got some pretty good oral-facial muscles, a fact that by itself, makes all the breastfeeding worth it..

It's not that surprising to me as my boys seem to develop their speech sounds before their motor skills.  Quinn, for example, was not walking until he was almost 2, but he had an extensive vocabulary. He was an enormous chunk of a kid (thanks to early weaning and formula) and in the words of one of my closest friends, he was all "Legs?  What are they good for?"  Wyatt seems to be following in his brothers non-footsteps as he is not interested in putting weight on his feet.  We still try however, making sure that we try a little weight bearing exercise every day.  He is building his leg and core muscles on his own though.  When left on the floor to roll around a bit, I will often find him with his feet up on a large object (such as the couch) and pushing against it for resistance.  I've also seen him frequently lift his bum off the floor doing pelvic lifts.  It's fascinating to watch;  it's almost like he knows he has to work on his muscles a little more.  I'm sure he really gets the hint when Zoe walks by and randomly tries to pull him up by his ears.

Our last major hurray of the week is also courtesy of our wee man.  Aside from emitting noises when tweaking facial features, we are also random wavers.  It's not unusual for us to look over if there is a pause in the conversation and wave at one of the kids.  Sean was treated to a real surprise at breakfast yesterday when Wyatt actually waved back.  He's been doing what, to be honest, we thought was flapping for quite some time.  Now however, it has a purpose as he will gleefully wave back, using his whole arm and giving that smile that lights up his whole face while simultaneously squeezing your heart.

Long ago, I used to have a necklace that my mother gave me that read "Live, Love, Laugh".  I'm not sure what happened to it, but I've never really strayed too far from its simple philosophy.  Life is for love and laughter and our little family is blessed with bucketfuls of both.  There are times that are harder than others, that is for sure.  There are still days that I cry in the shower;  not because my son has Down Syndrome but because he was born into a world that rewards ignorance and prejudice.  However, my tears are usually dry long before my rebellious hair and it's not long afterwards that I am belly laughing at new antics or marveling at some new feat.  In actuality, my little troupe may not be as well received as Frick and Frack, but we headline our own living room seven days a week.  Come by some time, we're not going anywhere anytime soon.  Be sure to try the veal if you do. 

Wednesday, June 6, 2012

Understanding Atrioventricular Septal Defect (AVSD)

This topic is a very personal one for me as my son Wyatt has an AVSD, albeit a small balanced one.  In fact, it was the discovery of his AVSD in utero that told us that he probably had a chromosomal disorder.

It is a terrifying thing to hear that your baby has a hole in his or her heart.  If my son had been born as little as thirty years ago, his prognosis probably would not have been as good.  I am lucky in a way, as I am a Registered Nurse and therefore have a little bit of knowledge in this area (and know how to readily access more).  Many parents do not.  It is my hope that by creating this piece, I will arm parents with a little knowledge and dispel some fear by giving you a no-nonsense, straightforward (yet not too technical) explanation of what the heck AVSD is and what it will mean for your family.

AVSD is a structural defect of the heart that affects multiple organ systems.  It is very common, accounting for 5% of all congenital heart defects and 17% of heart abnormalities discovered in utero in the general population. 42 to 48% of children with Down Syndrome have a heart defect;  45% of these are AVSDs.

Mainly made of muscle and connective tissue, the heart itself is a complex organ,   In order to understand what an AVSD is, it is important to understand the specific structures of the heart and how this affects blood flow to the entire body.

Blood Flow Through the Heart

The heart, essentially, is a pump that moves blood around the body.  As the tissues of the body require the oxygen that we breathe, the heart provides the force needed to deliver the blood and its oxygen payload to the cells, then return the deoxygenated blood to the lungs to 'refuel' and pick up oxygen again.  As with all mammals, humans have a heart that is highly specialized.  The left side of the heart deals with oxygenated blood, the right, deoxygenated blood (blood that has delivered its oxygen).  The wall dividing the right from the left side that travels the length of the heart is known as the septum (shown here in pink).
Diagram of the human heart, by Wapcaplet, Creative Commons.

The heart is further divided by two sets of valves, creating, in essence, quadrants.  The top two quadrants are referred to as atria, while the bottom two are referred to as ventricles.  The right atrium and ventricle are separated by the tricuspid valve, while the left atrium and ventricle are divided by the mitral valve.

Deoxygenated blood is brought to the right side of the heart (from the rest of the body) via two large veins known as the superior and inferior vena cava.  It is pumped to the right atrium, through the tricuspid valve to the right ventricle and then up and out through the pulmonary valve to the pulmonary arteries where it is taken to the lungs to receive oxygen.  The blood returns to the heart through the pulmonary veins and enters the left atrium. It is then pumped through the mitral valve, then into the left ventricle where it passes through the aortic valve and into the aorta and out to the body. As the oxygenated blood in the left side of the heart has farther to go (ie: the entire body) than the right side (ie: to the lungs), the left atria and ventricle are of a higher pressure than the right, giving them more 'push' with each beat. 

Click this link to view an animated representation of blood flow through a normal human heart*

AVSD and Blood Flow

An Atrioventricular Septal Defect is just as it sounds, really:  it is a "hole" or a missing part of the septum of the heart, extending from the atria down to the ventricles.  Instead of a mitral and tricuspid valve, there is a "shared" or common valve in the centre. An AVSD can be described as "complete", where the entire septum is missing, "intermediate", where the ventricular aspect is small and "partial".  In reality, there are many different ways to describe an AVSD, based on what structures are altered;  for our purposes we will continue to use these terms.  In a partial AVSD, there are two distinct valves instead of a shared one although typically, they will not function as well as they should.

Since a piece of the partition is missing, the oxygenated and deoxygenated blood mix.  As the left side of the heart is under higher pressure, the blood is pushed to the right side of the heart and forces more blood than normal into the pulmonary veins and into the lungs.  The mixing of the blood delivers less oxygen to the body, causing the heart to work harder, which in turn forces more blood into the lungs. 

In a "balanced" AVSD, the pressures in the heart stabilize to a "medium" pressure area;  although the blood from both sides mixes somewhat, it is not as dramatic as it is not being actively pushed from one side of the heart to the other due to a pressure differential.  As a result, less blood is pushed into the lungs.

Click this link to view an animated representation of blood flow with an AVSD*

Diagnosis of an AVSD

AVSD can be diagnosed in utero by an ultrasound (a fetal echocardiogram).  In a normal heart, the junction of the two valves, plus the septum make a distinctive cross formation. With an AVSD, the cross formation is incomplete.

Normal Heart
Heart with AVSD
(Images courtesy of Ultrasound Image Gallery)
ECG with AVSD (Image courtesy of Paediatric ECG
After the child is born, an AVSD can be heard (auscultated) through a stethoscope as a heart murmur.  An electrocardiogram (ECG or EKG) will show a distinct pattern.  An oxygen saturation monitor would indicate when the blood had a lower than normal level of oxygen.  A chest X-ray would show the size, position and shape of the heart, which would indicate any enlargement or megality, hypoplasia, etc.  The infant's temperature, pulse rate, blood pressure and respiration rate is also used for assessment purposes, as is specific blood work.

AVSD Symptoms

Infants with an AVSD generally start to show symptoms a few months after birth.  Initially they will have problems feeding and will tire easily.  The child will sweat, will breathe harder and faster and grow slowly and/or lose weight.  They may be blue and may have frequent chest infections.  As the blood is forced into the lungs and the body does not receive the oxygen it needs, typically pulmonary edema and congestive heart failure ensue.

Occasionally this does not occur in an infant with a complete AVSD; instead a condition called Pulmonary Vascular Resistance (PVR) develops.  In this, the smaller arteries of the lungs are constricted by the surrounding muscles to prevent them from being congested with the extra blood by the higher pressures of an AVSD.  Due to this, many of the symptoms of congestive heart failure are prevented, including decreasing the amount of blood pushed (or "shunted") from the left to the right side of the heart.  In fact, blood from the right side could easily travel to the left, causing low-oxygen blood to be pumped directly to the body.  When this happens, cyanosis can occur.  Auscultation of the murmur would also find it diminished or softer, compared to one without PVR.

PVR (or PVD, Pulmonary Vascular Disease as it is sometimes called) has a higher incidence in the Down Syndrome population.  Children with this condition tend to develop and grow better than those without;  however its presence tends to facilitate the repair of the AVSD sooner as there is a concern of the vessels becoming restricted permanently.  Repairing the AVSD would lower the pressure in the pulmonary artery and therefore relieve the PVR.

The symptoms associated with a partial or intermediate AVSD tend to be more subtle than those of the complete AVSD.  There is still an larger volume of blood being pumped through the pulmonary artery, however, the shunting effect takes place mainly in the atria, causing the pressure in the artery to remain slightly lower despite the larger amounts of blood being moved.  The lower pressure causes causes less growth and breathing problems than experienced with a complete AVSD.  The symptoms can be so subtle in fact, that a partial AVSD can remain undiagnosed for months and even years. 

AVSD Treatment and Interventions

Initially, an AVSD may be treated with diuretics (such as Lasix) and ACE inhibitors (such as Ramipril) and antiarrhythmics (such as digoxin) to alleviate symptoms and give the patient some time to stabilize and/or grow before surgery.

Although some rare instances do close on their own, the vast majority of AVSDs require some form of surgical intervention (that varies, depending on the type and structures involved).  Most often, complete AVSDs are repaired between 3-6 months of age and partial/intermediate taking place between 6-18 months.  Once again, the severity, placement and structures involved dictate the precise procedure.  Smaller "holes" may just require closing, where larger areas need to be "patched".  Although this used to mean hospital stays of weeks at a time, most children are discharged home within just over a week of their surgery (the stay for complete AVSD repair is longer as it is more involved). 

The survival rate for AVSD is also dependent on type, however all range between a 97-99% success rate.  Follow up surgery may be required years later to tune up leaky valves (specifically the mitral valve).  Anticoagulants may be prescribed if the valves become too leaky to prevent blood clots from forming. In the event that the electrical conduction of the heart becomes damaged, a pacemaker may have to be surgically installed. Later in life, a condition known as Sub-Aortic Stenosis can occur, where a blockage forms below the aortic valve and requires surgery to repair.  Endocarditis can develop and any invasive procedures (such as dental cleanings, surgery, piercing and tattooing) will require antibiotics prior to prevent large amounts of bacteria from entering the bloodstream. 

In Conclusion...

The diagnosis of an AVSD is no longer a death sentence.  With recent advances in medicine, the management and repair of AVSDs has become almost routine.  Although it remains a significant life event for you and your family, your child's diagnosis need not overwhelm every aspect of daily life.  The vast majority of people (regardless of chromosome count) that have an AVSD repaired, go on to live happy, healthy, productive lives.  It is difficult to learn that your child has a genetic disorder, of this I can attest first hand.  Hearing that your child has issues with his or her heart can be even more frightening.  However, with a little education and insight, this aspect of your child's health need not be devastating to you or your way of life.

*Animations courtesy of Children's Heart Federation, ©2012.

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