Sunday, February 27, 2011

Awaiting the touch of a little hand...

My Nana.

I miss her. Differently than I do Gwen and my sister-in-law and brother-in-law. I don't know why - but it is how we are wired. We let our grandparents go (and half the time I'm sure she is with me). I loved her so much. My Grandpa too. Each relationship was its own thing, its own love.

But my Nana was impressionable upon me in formative ways... so much of my time with her shaped who I am. One small, huge thing - was her love of poetry. She read to us over and over again, my brother and I several favorites.

One she recited, as best she could, from memory. She had memorized it from a reader at school, on her own volition and never saw it in print again. Before she died, thanks to the internet and being a college student with special access, I found an online poetry database and found the poem.

I read it at her service. I read it at Gwen's service and at my sister-in-laws service. I honestly can't remember but I don't think I read it at my brother-in-laws service, even as it specifically was about the loss of a younger brother.

I've yet to publish it here. But I will someday.

Tonight it struck me, that another poem we loved was about loss, child loss...I looked it up just now, and...can you guess? Cried. This weekend I had the first few lines of "The Raven" in my head and noted then, that was about grief, longing...and death.

It's raining outside. Pouring. It rained during Gwen's service. Poured. It rained the day she died. One of those beautiful thunderstorms, it rolled in as we were heading out, out to go somewhere with Lil - anywhere but our house, empty forever of Gwen. I'll never forget those clouds and the sun....I remember the clouds being almost tunnel like...I remember the wind.

I remeber the warm sunny moment when we sat down and told Lil (how were we going to tell our little child that our other little child died?). We told her and the sun was shining. Now with the spring, I feel the same way - how do I welcome spring, when it is all over-writing her time on earth, here with me? I will. I can. But, the memories - I remember the odd Spring I had last year - and how it froze forever for me - the tree just budding and then stopped. My Spring that never even smiled. The sun was shining and we were fooled. We thought she'd make it... we really did.

I remember the rain that started the night we before we were returning, after the event in October... it followed us home.

"Come read to me some poem...some simple and heartfelt lay. That shall sooth this restless feeling, and banish the thoughts of day."

Thank you Nana. Poetry helps. Her tree will have a small poem on her plaque. And, here, for her blog - I'll share the other poem later, but for now - the one I remembered tonight, is this - and it speaks to every aching parents heart - I know - who misses their child, who's house is empty of that sweet soul - loudly empty. Once upon time there were even more of us - who lost children. I'm well aware that it's only in our more "modern" era that we are so separated from early death. Please, don't "protect" your children from sadness and loss. Read them good poetry like this - it's okay for children to know that people, even children die. My Nana read this to us since we were little and we loved it. Now I love it more.

Thank God sometimes words do a half decent job...


THE little toy dog is covered with dust,
But sturdy and staunch he stands;
The little toy soldier is red with rust,
And his musket moulds in his hands.
Time was when the little toy dog was new, 5
And the soldier was passing fair;
And that was the time when our Little Boy Blue
Kissed them and put them there.

"Now don't you go till I come," he said,
"And don't you make any noise!" 10
So, toddling off to his trundle bed,
He dreamt of the pretty toys;
And, as he was dreaming, an angel song
Awakened our Little Boy Blue—
Oh! the years are many, the years are long, 15
But the little toy friends are true!

Ay, faithful to Little Boy Blue they stand,
Each in the same old place,
Awaiting the touch of a little hand,
The smile of a little face; 20
And they wonder, as waiting the long years through
In the dust of that little chair,
What has become of our Little Boy Blue,
Since he kissed them and put them there.

Sunday, February 20, 2011

Read this and thought of all those who long....

‎"What moves through us is a silence, a quiet sadness, a longing for one more day, one more word, one more touch, we may not understand why you left this earth so soon, or why you left before we were ready to say good-bye, but little by little, we begin to remember not just that you died, but that you lived. And that your life gave us memories too beautiful to forget." ~Unknown~

For my cousins mourning their loss of Steve after his long battle with cancer. I know the memories will always be beautiful. He had a twinkle in his eye - I smile thinking of him. I'm sad for his family. We live far, we hardly ever see them, but they are so much on my heart as they walk through these days of fresh pain.

For my "sister-by-heart" friend Nicole and her husband Roger, who I know, will long forever for Travis. For all the "heart-parents" and baby-loss parents I know... for each... who long.

For my little family - longing each their own loss, unique unto each of them. Learning to live with the "alwaysness" of longing...

You lived. Thank God you lived. So I guess I'll take the pain of this. I know I will. Because you lived. Thank God you lived.

But always... always I'll long.


Another CHD Warrior...

Travis DiCarlo. Little CHD warrior...is in heaven now.

He was recovering well after surgery on Thursday. Then suddenly he wasn't doing well. My heart and prayers to Nicole and Roger, my tears and heartache for the loss of Travis.

Nicole is one of the "heart sisters" behind http://heartsisters.blogspot.com/

She only learned on Feb 4th during a heart "check up" of sorts, that he would need a specific surgery, an "extra" unanticipated one....

Last Thursday, this little cutie-pie kissed his baby sister good-bye and off to surgery he went. He passed away yesterday morning.

The pictures - please visit the link below and see him this past week, just before surgery. Then please, join me with prayers for his family...

I know the reality of CHD but I never want to believe it - I really don't want to believe it today... so please, take a moment to know a tiny bit of this sweet child, the photos with his mommy and daddy and sister... and see how beautiful he is... and cry with me:


"Maybe he's happy with Gwenyth in heaven, and allllll the other babies."

- Lillian

----

And all that may be true. But his mommy and daddy can't hold him anymore....

I know every moment they had will be a treasure.

I know.

But I also know...





Monday, February 14, 2011

How to Lower Your Risk and Advocate for Your Baby's Tiny Little Heart


Happy Valentines Day!


Congential Heart Disease Awareness Weeks ends today. However this whole month is "heart" month, so I'll keep posting about CHD on Gwen's site. There's a lot to share.

About Congenital Heart Defects; a Short Review

A congenital heart defect (CHD) is a

structural problem of the heart that occurs

in the first seven weeks following conception.


CHD’s are the most common type of birth defect, affecting 1 in 100 babies born.


To date, doctors don't know the cause

of the majority of congenital heart defects.


---------------------------


For today - this is what I want every woman who is or who may one day become pregnant to be aware of:

Only 28% of women
of childbearing age
knew
Folic Acid
can prevent birth defects.

11% knew
Folic Acid should be consumed
prior to pregnancy.

------------

Folic acid can prevent up to 50 percent of many heart defects but only if taken for about two months prior to conception

according to pediatric cardiologist Darshak Sanghavi.

-New York Times 5/19/09

------------

  • Folic Acid and Folate are the same thing. Folate occurs naturally in certain foods. Folic acid is the synthetic form of this B vitamin

  • Folic Acid is available to take individually. If you are having trouble taking your prenatal vitamins due to pregnancy-induced nausea and decide to temporarily halt the multi-vitamin, then be sure to continue to take folic acid.

  • Among other things, Folic Acid deals with energy production, formation of red blood cells, DNA and RNA synthesis, and proper cell division. Folate is needed to replicate DNA and maintain normal levels of red blood cells in the bone marrow.

  • Yes. A study was just released and hit the papers two days ago that said too much Folic Acid may cause cancer in off-spring. It will be interesting if and what the March of Dimes has to say, but from where I stand, the research and the findings are so preliminary, so early in the studies (only mice have been looked at) and quirky at that (some cancers were actually decreased...). Read from the source, for yourself: Folic Acid and Mice Study and then go get a bottle of folic acid or bake some broccoli (great recipe with that link).

That said, keep in mind the fact is, the cause of most congenital heart defects is unknown.

Research in this area is only beginning to inch towards learning possible genetic causes... and in some cases possibly enviro-genetic (where what the mother eats affects how the genetic code plays itself out. No joke.) I'll post the research headlines later. But for now, trust me, folic acid is every women's friend.

------------


Finally, this is for the pregnant ladies out there -

Your 20 Week Ultrasound (what to ask your doctor) & Pulse Oximetry:

It is simple. You can be your babies advocate. And you need to be because to-date many heart defects are still missed until things are bad for the baby. Many doctors do not do as an extensive look at the heart at they should during the 20 week ultrasound and few doctors currently will do a "pulse ox" on your newborn.

Why is this? Because it takes a LONG time for this type of thing to become part of common practice. I believe both will someday.... behind the scenes movement is happening. But do you want to wait when it is your babies health and life on the line? Of course not. And I'm not trying to hype it up here - this is a reality and you should want to know about it and know how to avoid it if you can.

It is a cinch.

At your 20 Week Ultrasound:

When you are there, while they are looking at your baby, measuring and taking notes ask (personally, I think the first two are the most important, so memorize those):


1. Do you see 4 chambers?


2. Do you look at the arteries or outflow tracks as part of your scan?

*Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.


3. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

4. Is the heart rate normal? Is the heart rate too slow (less than 100 beats per minute), too fast (over 200 beats per minute), or irregular? *Note: A normal heart rate range for a fetus is 120-180 beats per minute.

5. Is the heart function normal? Does the muscle work normally? Is everything hooked-up correctly?

Source:

http://www.examiner.com/pregnancy-health-in-national/the-top-five-questions-to-ask-during-your-20-week-ultrasound-to-detect-congenital-heart-defects

-------------

After Your Baby is Born; Pulse Ox Screening

Finally, after your baby is born - be aware - most heart defects, even complex ones requiring surgery, are not detected in utero. So ask for a "pulse ox."


With pulse oximetry, a small sensor beams a red light through the foot and quickly measures the amount of oxygen in the blood. This test can help identity heart problems in otherwise normal-appearing newborns before they leave the hospital.

(Gwen's Feet at CHOP with her little "pulse ox")


Read more:

Screening For Broken Hearts - New York Times
(link to full article - an excellent read)
"In October (of 2008) researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants probably die each year due to missed — but treatable — congenital heart defects."


Newborn Coalition Applauds Federal Advisory Committee Recommendation

"The Newborn Coalition, an advocacy group for America’s newest, most vulnerable citizens and their families, applauded the Committee for voting to recommend this vital screening – only the second condition to be added for inclusion to the mandatory newborn screening roster and the first point of care screening to be recommended by the committee. Pulse oximetry screening for CCCHD joins hearing screening as the only other point of care, non-metabolic screening to be recommended for all newborns."


(who even knew there was such a thing as the "Newborn Coalition"? They are fairly new themselves, and I'm for one, excited...check out their site when you follow the link above. Impressive.)

Saturday, February 12, 2011

Please join me in Reality. Please take part in the Little Things.






(click on the title above to read full feature article)

Above is a link to an excellent article on CHD and HOPE. A video is included, of a sweet little two-year old girl, Tiana who's life-threating CHD was not diagnosed until she was three months old and yes, her very life was on the line at that point.

Every parent can take one step to try avoid this (hopefully one day you won't have to ask). But please, as for a "Pulse Ox" screening of your newborn (more on this in a future post). Tiana's story is really something- she used an artificial heart called a "Berlin Heart" which is still awaiting FDA approval (should happen this year).

I encourage you to follow the link..it's a great read.

Then please, if you will, spend a moment in reality land with me...and see why we want research to increase ten-times fold - see what only CHD's familes are privileged to witness.... and help absorb some of the reality with us.

-----
This above picture of is Gwen just as they were wheeling her off to surgery. I have a video but currently the video is not working here... Sweet Gwenyth opened her eyes as they were wheeling her down the hall. We are acting like things are normal...you can hear our conversation with the nurse in this video. But I remember seeing her go into that room without me. Vividly.

I remember after that, going up the elevator to meet with the surgeon before the surgery. I remember everyone telling me I had to take care of myself because I just had a baby. She was two days old. And she amazed all the doctors that she made it that far. We hadn't even grasped that detail yet. I know the day actually went by quickly - I am not sure if I had to move out of my hospital room that day, but somehow we had things to do and the time did go by pretty quickly.

I remember we got our update as they said we would, one hour into the surgery from a nurse named Laura who was actually going to be watching the whole thing (she had never seen a "truncs baby" before). Looking back to the day while we waited for the news, I don't want to remember... so we'll just stop here. I'm sure it's on the blog.

---

Okay, now for the reality of CHD according to us. This week, for CHD Awareness Week, 2011 - CHD parents are posting photos in the days after surgery to help the world see the truth of what it looks like. It is a "silent disease" because the scars are covered and the kids appear very normal after leaving the hospital - few people see what these kids surmount. Here's our contribution;

Have a look. Be amazed - please don't avoid it - take it on and see it - so that it's not only the burden of the parents to know the definition of a complex CHD requiring surgery.

Look at the photo below and remember how far Gwen came - how fast she recovered - and see why we want everyone to know about congenital heart defects - because currently this can happen to any baby because the cause for most CHD's is still unknown.


We need to know why and how to stop heart defects from forming if we can. I believe that will happen. ( I can't wait to share all the CHD research headlines of astounding findings all just in the year Gwen was born...it is yet something else that I'll get to here on this blog). I want everyone to be as excited and hoping for a cure as all CHD's families are...

I also want everyone to know how to advocate for their baby and how protect their baby before they get pregnant. There are some things you can do to lower your risk and believe me, while there is so much HOPE for these kids... you want to avoid this for your child at all costs if you can. (I'll be posting about that later this month for sure - it is important to me to arm every woman with the knowledge they need - every woman of child-bearing age.)

-----
Back to that day... a little more remembering...

I know when she returned, we saw they had to leave her chest open...which wasn't the best case scenario, I know the surgeon hoped to not have to do that. She had a pacemaker - I didn't know the pacemaker also, wasn't the best (I thought all open-heart surgery babies needed them and that they all used one during recovery).

I remember how helpless it felt to see you baby completely sedated and full of meds. I learned how tenuous it was when she had a little bit too much morphine and we almost lost her - but they brought her back - while we watched.


You never believe your going to loose your child. You can't. It's not in the DNA of the parents. But you also know something is very, very wrong when you see them after surgery. It's a weird place to be. Myers has shared with me since, that during both times to the hospital, CHOP and here the day she left - he never thought she could die, not while she was there in the hospital. I don't know if I did either - I think I was more worried because I knew we might think that... (which in that case would mean it had happened.)

Yet I witnessed one of the most amazing things that occurs every day...I never knew a thing about it before.

I saw my tiny, newborn baby have her heart repaired and her little body heal up... I'm humbled. Completely, entirely "brought to my knees" as one "CHD parent facebook status" being passed around perfectly describes.

But that is enough. Gwen was enough and yet she is one of thousands... No parent needs to be so-humbled.

If this is the best we can ever get - we'll take it. But so long as there is a chance that we can do even more for these little "CHD Warriors" then, that is where I am. If we've been blessed to come this far in our abilities to help these kids...why shouldn't I hope and pray for an even brighter future?

And in the meantime - the simple things matter. That is really what my little-loud advocacy is for...the little things each of us can do. Giving blood. Little donations here and there. And looking at your healthy children with awe - and letting that bring you to your knees.

Don't miss that. Every breath you share in the same time and space that your child breaths... don't miss that.


(Thank you Marianna for your visit. For stopping in and surprising us. For meeting Gwen and for getting one more photo we would not have had... sweet little girl in the onesie her Grammy bought her... little polka dots, my little Springtime baby... Look at those deep blue eyes... in my sweet friend Marianna's arms.)

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Wednesday, February 9, 2011

CHD Awareness Must Read; "Miracle is his daily grind"

"...after hours of surgery, this child’s heart, stitched up and restarted, might well beat once again, sending blood and life and a future to a body that earlier this day was dying. What happens when you see this is something both unreal and hyper-real. It’s something awesome and emotional. Something spiritual.

You feel small."




--


Today I'm posting excerpts from;

To Save a Child’s Heart

Chuck Fraser and the Unbelievable Life of a Pediatric Heart Surgeon

by Tim Taliaferro


--
This is a well-written feature story on a pediatric heart surgeon . It deserves to be read in full (I strongly encourage it). But, as I know, time pressures abound for all - I attempted to capture some of the most breath-taking parts. Enjoy!
---

"They keep it meat-locker cold in the O.R. It smells of sterilizing chemicals. The bypass machine, a maze of tubes and tanks, whirs quietly next to another machine that keeps the temperature of the patient’s blood below freezing, inducing hypothermia. It hums like a refrigerator...

Every heart surgery has four basic steps. The first involves opening the chest by cutting through the breastbone. Step two is getting the patient on bypass. For a surgeon to open up a heart, he or she must stop it, requiring a machine to then circulate and oxygenate the body’s blood. They call it bypass because the surgeon will insert tubes into the aorta and the inferior and superior vena cavas that will divert or bypass the blood away from the heart. Step three is stopping the heart and repairing it. Step four is getting off bypass and sewing everything back up.

Each step takes considerable time, and each has its particularly tricky moments. Choosing the size of the bypass tubes is one such moment: a tube that’s too big could damage the artery or vein, while one that’s too small might hinder bloodflow. And moments before you begin the bypass, the patient must be given blood thinners, which means from that point on any cut or puncture will be much harder to stop from bleeding uncontrollably.

Once the patient gets on bypass, the room goes totally quiet. The monitors that had been softly beeping go mute, and after an injection of potassium into the surrounding coronary arteries the heart very suddenly ceases beating. Now, with one quick movement, Fraser slits it open.

Even though he’s seen the insides of hundreds of hearts and has seen many scans of this one, Fraser can’t know exactly what he’ll find until he looks inside. No two hearts are exactly alike, and when dealing with congenitally defective hearts, anything is possible.

It’s easy to take for granted nowadays that doctors can open up a heart and fix it. The novelty of open-heart surgery has faded in the decades since it was first done. What was once a rare and brave new medical enterprise is now an everyday one. It’s not that it’s no longer impressive — it’s just not surprising anymore.

Yet something happens the first time you peer into an infant’s open heart, formerly beating, currently stopped, while a surgeon manipulates its innards, correcting with scalpel and stitch what went wrong when some tiny strands of genetic coding crossed. The sight defies belief. This isn’t a real 5-month-old on this operating table, with its chest sawed open and its strawberry-sized heart sliced down the center — it can’t be.

But it is. And not only that, but after hours of surgery, this child’s heart, stitched up and restarted, might well beat once again, sending blood and life and a future to a body that earlier this day was dying. What happens when you see this is something both unreal and hyper-real. It’s something awesome and emotional. Something spiritual.

You feel small.

Standing there, looking down into the atria and ventricles, the enormous scale of the operation hits — and the stakes. Hearts aren’t meant to be seen. When they are, it usually means someone has died or might soon. As far as treatments go, heart surgery represents the nuclear option, a bold final effort to save a life by bringing it to the brink of death. The risks are high...

Three steps completed, one still to go. Getting the patient back off of bypass is no easy matter, and in a way it’s a moment of truth. The heart opened, the fix made, and the heart closed back up, this is the first chance to see whether it will work.

The heart is restarted. It’s beating fine. Fraser instructs the perfusionist, the person who runs the heart-lung bypass machine, to reduce bypass to 90 percent. “Yes, sir. 90 percent.” All’s OK. Then 80 percent. Something beeps in the background. Now 70 percent. More beeping. Fraser looks thoughtfully at the heart. The beeping gets louder, more urgent. Something’s not right. Fraser looks down again, then back up at the monitor. The patient’s vitals are falling. “Go back on bypass,” he says.

A great many people have arrived in the operating room. Some had been here earlier and left. Others are new. The atmosphere has turned tense, and everyone’s alert at their stations.

The patient is safely on bypass, but Fraser’s perplexed. “I’m not understanding this,” he says, between looking up at the monitor readings and checking around the heart. He’s wracking his brain. The minutes crawl by.

Every time they try to back off the bypass, the patient responds poorly. The problem doesn’t appear to have to do with the heart, which is beating fine. Apparently the lungs are to blame.

Fraser seems mostly frustrated at not being able to do something. There doesn’t appear to be a surgical fix for the problem, so he must stand there, his hands restless, watching the monitor, hoping in the seconds between each update that the numbers will improve.

As the minutes turn to half-hours, the experience drives home what an audacious idea the notion of heart surgery is. There’s no such thing as a minor surgery. It is risky, intrusive, Promethean work trying to fix what nature got wrong. And even the very finest surgeons in the world sometimes get stumped.

Fraser tries again to back off the bypass, this time in smaller, slower increments. Ninety percent. Stop, wait. A few beeps and a slight downward slope on the graph. Then steady. Now 85 percent. A few more beeps but no crisis. Slowly, and with caution, they back off the bypass completely, and in time Fraser is satisfied that the patient is stable. He begins the long, slow effort to stitch up the child’s chest and wire shut its sternum. At 6:15 p.m., he finally steps away from the operating table for the first time.

When surgery goes well, and Fraser manages to fix and restart the heart, ease the child off of bypass, and sew up its chest; and when, after eight nonstop hours of intense concentration, he finally steps back from the operating table; and when, hours later, the infant opens its eyes and sees its parents’ faces, the whole episode seems, in a word, miraculous.

For Chuck Fraser, this is why he became a surgeon. It wasn’t just because he had the brains, the hands, and the constitution for surgery. It wasn’t for fame, prestige, or money. He became a surgeon for those moments afterward when it becomes clear that a child’s life has been profoundly changed. “I became a surgeon because the results are immediate,” he says. “I became a children’s heart surgeon because the results last a lifetime.” It’s what gets him up every morning, what sustains him through emergency weekend-long transplant operations, and what makes the time away from his family worth it. His wife, Helen, says, “It’s the difference between a job and a calling.”

* * *

At a little after 7 p.m., he’s just passed the 13-hour mark and Fraser is sitting in his office on the 19th floor. He’s still in his surgical scrubs and hat, leaning back in his chair, elbow on desk, head on fist. He stares vacantly ahead: he’s just now coming down from the adrenaline high. Far from a hero’s welcome, several dozen e-mails await him, and he expects an hour of paperwork still ahead.

Shortly after 8 p.m. Chuck Fraser turns out the lights in his office. His secretary has long since left. He bids the crossing guard good night as he walks back to his suburban and drives his tortuous route home.

What amazes someone when this miracle is his daily grind?"



Monday, February 7, 2011

Awareness=Funding=Research=Hope=Life.









"There is a political element to research funding. Though we would like to believe that the best or most important science always gets funded, this is not the case..."

Stop. Re-read the quote above. Now read:



Congenital Heart Defects are the # 1 birth defect in the country.

Can you guess how funding for CHD research adds up?

Yep. Not as "politically important" apparently. Oh REALLY? Tell that to the kids of the #1 birth defect. Then have a chat with their parents. Their siblings. Friends. Go visit a few graves.

---

Bring on CHD Awareness Week 2011 - and welcome to it, your in it. :)

Now, after reading those tid-bits, you may see why I take the "job" Gwen gave me very seriously and why this post may be a little edgy.

And, now, if you are out of time, you need not read more. That really says it all. Those are your "CHD awareness" nuggets for the week.

But, for those of you who are really in this with me for the long haul thank you, and, hold that thought above and read on. See if your feathers get a little ruffled too.

And for those of you who remember Gwen as a real, whole, entire-person who could have had an even better chance to live longer, just well, hold that thought and hold her with me, if you will, (I'm always holding her, just so you know) and read on:

CHD is the # 1 birth defect in the country.

Did you hear of it CHD's before Gwen?

I did, to be honest, but I didn't know it. One of my best friends I grew up with has a child with Aortic Valve Stenosis. I'm not sure if she even knows that we are under the same umbrella (I've yet to discuss this with her and tell her she is a "heart mama"). CHD as a title, is a big umbrella - and not all CHD's are as complex and life-threatening as Gwen's.

However, wouldn't you think the #1 birth defect would be well-funded for research and as well-known as the common cold?

Ignorance may be bliss, but it hits hard. Let me tell you.

I personally, would have like to have known that the 20 week ultrasound can give you really bad news. I feel like a moron, now, that I didn't know that. I didn't know that a baby with a heart defect CAN survive that long in-utero. It just would have been a feather in my cap, to know that. Nothing would have been better per-say, upon learning about Gwen's heart problem. However, I may not have been so completely blind-sided and full of guilt wondering what I did wrong. And I'll take that. That would have been just nice.

I had never heard of such a thing before - surely therefore, I did something horribly wrong which caused her heart to malform. Logic doesn't live in emotion land. When it's your child, you believe your emotions.



This leads me to the next important detail I'd like to share. Keep in mind: #1 defect, low funding therefore less research...

Congenital heart defects have NO KNOWN cause in the majority of cases.

This reality both helps me as I try to convince myself that I really couldn't have done anything wrong knowingly, but also, well, on the flip-side, wouldn't it be fantastic had the funding been there years ago, so that I perhaps there would be a known cause by now and I could have prevented it, had I known how? I'd be holding Gwen in a way everyone can actually see right now.
---
Okay, well, here's some more highlights that raised my eyebrow anyway. I was researching, trying to really understand WHY there was so little funding for CHD. I kinda wish I didn't know now. Ignorance is bliss. This hit hard.

"Research in areas of political interest may be funded at a rate up to twice as high as average while other areas can be neglected.... Though research related to CHD has grown considerably over the past decade, grant applications in this area do not reach the average 20% success level. Those of us working in the area feel that the lack of a political impact in regards to CHD has been a disadvantage relative to other areas of research. In general, diseases and defects in children get proportionally less emphasis than adult diseases."

"The problem with low funding rates for a particular research area is not only that useful research opportunities are missed but that the low probability of success drives promising scientists into other research areas. "


Feathers ruffled?


To CHD Research Scientists:

God bless you, each and everyone, who has or is is dedicating time to studying CHD.

I met some of you at CHOP and the gratitude I feel (to you and the surgeons, doctors and nurses)... it is the two months I had Gwen and all the HOPE for her future we really had... words don't exist for that kind of gratitude.

Had Gwen been born over 50 years ago I would have taken her home knowing she didn't have a fighting chance. Go back 20 years and repair her heart, and even then, "the early mortality rate after complete repair was higher than 25% in most series."

I'm grateful that hearts can be "repaired" and in awe of the amazing success rate and long-term survival for all kinds of complex CHD's - and I will say it again - how humbled I've been since really learning the complexity of the heart; how it is formed, all of it, in a mere eight weeks, and truly, I am astounded that the heart ever forms correctly.

As the heart does not always form correctly and we have come so far in saving these lives, lives that are just beginning no less, it is inexcusable that the research is underfunded. The funding should be there for all CHD warriors - children and the adult survivors alike. My hope is that advances in treatments and technology are exponential in the years ahead.

Awareness=Funding=Research=Hope=Life.


The quotes above are from; A View of Congenital Heart Defect Research by a Basic Scientist by Raymond Runyan, Ph.D., University Heart Center, University of Arizona. I encourage you to read the entire piece. It is a fascinating look at the research that has been done and what is on the horizon for CHD research. http://tchin.org/resource_room/c_art_05.htm