A Moment for CHD Awareness

Call me crazy, but a "no brainier," completely painless, dirt cheap, and super-fast test that could reveal serous heart problems is the LEAST we can do for tiny persons just beginning their life... however few and far between babies with CHD may be (ahem, the # 1 birth defect). If one life is saved, that is enough for me.

In Missouri it's called Chloe's Law - here, for me, writing from Virgina - I'm going to call it "Gabe's Law" for now. What do these two children have in common? They were both born with undiagnosed CHD's that could have taken their life rapidly. They both had doctors, who at first, actually downplayed the symptoms the parents raised (keep this in mind by the way, this idea of doctors missing symptoms of serious heart defects, just remember that...you'll enjoy the irony later).

I don't know Chloe, but I found her story online and was impressed by her mother's work on the "pulse ox issue." I do know Gabe. He lives nearby. Gabe was born with Truncus Aterious, like Gwen. At some point - I'd like to share more about Gabe and his family - but I have to stay on point -however his mother has been an integral part of support on my journey. For now, let it be known that Gabe is a thriving, smiling, 9 year old red-headed little boy. But he is one of many examples that, yes, CHDs can be easily missed.

I have to say, I appreciate this news article (which I will link to momentarily). Finally a journalist did some real leg work regarding pulse ox and dragged some meaty information out into the light. I've had questions - I couldn't understand why this was a decision a governor might have to ponder. Babies life? What's to think on? Move the pen. Right? I read this article and I now feel more fully "versed" on the issue, more "balanced" if you will. And my "stand" on the issue remains the same. Move the pen.

This article offers some insight into well, the "issues" raised against mandating this test as recommended by the department of health and human services. And while I'm glad to have some points to address as I try to help spread awareness for this issue - I have to say, I had to pick myself up off the floor first, after reading this article.

Before I go any further - I want to address the "issue" of bias - that I sound like a crazy "baby-loss" mama who is a giant alarmist who needs attention or perhaps is hyper-vigilant and over-sensitive and ya know, have lost my perspective. You know, the argument being that I am too close and all I see is CHD everywhere and I'm trying to make every one afraid.

Let me offer this, and take it or leave it, but I'll toss this other thought out there. I desperately want every baby that is born to have the best chance possible - and this (helping promote mandatory pulse ox tests into law) is ONE SMALL, tiny, minuscule thing I can do based on the "experience" and "knowledge" I bring as part of the CHD word and part of the "baby-loss" world.

I think of all my friends and family their children and beg God to keep this type of pain local - here - and never touch anyone I know with this kind of loss... I simply want to do what I can with what I know. And believe me, I know about CHD. Should I just sit on it?

In particular let's talk about this "kind of loss" (a baby dying from an undiagnosed CHD) and what I know about it from the "underground" world where "baby-loss moms" and "heart moms" meet up and share their stories and support each other: A baby, undiagnosed with CHD can die in a mothers arms while nursing. It doesn't happen often. Yes, it is rare. It is also preventable. Preventable trumps rare any day.

Read about Cora here if you think I'm being a dramatist.

I'm an advocate for all moms, moms who don't know about this- until -well, you get the diagnosis for your baby....). Believe me, YOU DON'T want your baby to die if you can help it, you don't want your friends baby to die, you don't want your neighbors baby to die - and yes, it "may not happen much" but if we can save even 1 life this year...isn't it worth the few minutes it takes to strap a tiny strip to a baby's toe and get an oxygen reading 24 hours after the baby is born?

I honestly can't believe there is any "argument' here...but read this article and see - there are people who are shooting down this proposal:

Test to detect heart disease in newborns may be mandatory in all hospitals.
 
And seriously - one argument proposed is that this test might give parents a false sense of security. Apparently there is concern that if parents are told their baby passed the pulse ox test they, "wouldn't seek medical care for symptoms that may develop later" - Um, excuse me - there is a remedy to that - it's called the written and spoken language. And pardon me as I get up off the floor...

Hopefully, doctors, you are giving plenty of information to new parents regarding ALL the tests and procedures preformed. Perhaps you even hand out information regarding other helpful areas relating to newborns (nursing, bathing, car seats, shaken baby syndrome, symptoms of potential medical issues, just to name a few). Please, tell me you are handing out information about symptoms of the number 1 birth defect. And you can say it and write it, that CHD's can be missed by pulse oximetry screening, and stress that parents need to know the symptoms.

Really. There is a "remedy"...to that "fear"...

Also -let us take a moment to address CHD symptoms here on this blog and help keep "awarenss" up and I'll even set a ground-breaking example. I'll include a "disclaimer."

Although helpful in screening for heart problems present at birth, a "pulse ox test" only screens for certain defects. Not all CHD's can be found by a pulse ox test, even severe ones can be missed. Here is more information regarding CHD's to keep in mind as you care for your newborn:

"Some congenital heart defects have few or no signs or symptoms. A doctor may not even detect signs of a heart defect during a physical exam.

Many heart defects do have signs and symptoms. They depend on the number, type, and severity of the defects. Severe defects can cause signs and symptoms, usually in newborns. These signs and symptoms may include:

• Rapid breathing
• Cyanosis (a bluish tint to the skin, lips, and fingernails)
• Fatigue (tiredness)
• Sweating while feeding
• Not gaining weight (failure to thrive)
• Poor blood circulation" 

(source CHD Babies)
-----

All said, I can't believe for a moment this won't pass in NJ and every other state. So I'm gonna go chill-out now.

But take a moment and read this article please, so I can know I'm helping to spread awareness. Spreading awareness really takes two here - I can't spread squat if you don't actually take in some of what I'm ranting about.

It was a perfect day...

...except, they were not here. 

May 14th, 2011 

Remembering our baby girl and our little sister.

----

Thank you to so many who prayed for peace and sent their love our way this weekend - we found peace we felt the love and care. Thank you. It helped.

More pictures and a video to follow... I couldn't get enough photos - it was so beautiful up on Skyline drive Saturday...and Lil's sweetness takes the cake in our little video.

----

The Open Window

by Henry Wadsworth Longfellow

The old house by the lindens
Stood silent in the shade,
And on the gravelled pathway
The light and shadow played.

I saw the nursery windows
Wide open to the air;
But the faces of the children,
They were no longer there.

The large Newfoundland house-dog
Was standing by the door;
He looked for his little playmates,
Who would return no more.

They walked not under the lindens,
They played not in the hall;
But shadow, and silence, and sadness
Were hanging over all.

The birds sang in the branches,
With sweet, familiar tone;
But the voices of the children
Will be heard in dreams alone!

And the boy that walked beside me,
He could not understand
Why closer in mine, ah! closer,
I pressed his warm, soft hand!

----

The Reaper And The Flowers

by Henry Wadsworth Longfellow

There is a Reaper, whose name is Death,
And, with his sickle keen,
He reaps the bearded grain at a breath,
And the flowers that grow between.

Shall I have nought that is fair? saith he;
Have nought but the bearded grain?
Though the breath of these flowers is sweet to me,
I will give them all back again.

He gazed at the flowers with tearful eyes,
He kissed their drooping leaves;
It was for the Lord of Paradise
He bound them in his sheaves.

My Lord has need of these flowerets gay,
The Reaper said, and smiled;
"Dear tokens of the earth are they,
Where he was once a child."

They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear.

And the mother gave, in tears and pain,
The flowers she most did love;
She knew she should find them all again
In the fields of light above.

O, not in cruelty, not in wrath,
The Reaper came that day;
'Twas an angel visited the green earth,
And took the flowers away.

----

"Life is a tragedy, confront it."

"Ever has it been that love knows not its own depth until the hour of separation." -Kahlil Gibran

Friday, May 14th. 3:30 & 5:30. Gwen. Marie. The hours of separation. It was this Friday in May -it was a Friday - and it hurts as though it was yesterday.

I find, myself, that Love for children is outside of time...and this type of wound - well it kinda stays... You get stronger in carrying it but only as any muscle forced to work will grow in accordance - the "Grief" muscle grows, the weight never changes. My baby-loss companion, Michelle writes, "The weight of the grief? Is always the same. Maybe some days, it's easier to pick up - but the size never changes. It's always heavy."

“Strength is born in the deep silence of long-suffering hearts; not amid joy.” - Arthur Helps

Yep.

And Friday morning, the same day in May - is here...and I see it all...I know, this time I know now how today will pan out...

"

Little I knew that morning, God was going to call your name, >
in life we loved you dearly, in death we do the same.

" (repeat twice when you read this.)

And I can conjure up in a split second ache, tears, and longing and devastation that is no different from the moment "it happened" - I saw my child die - I held her helplessly in a hospital room next to my husband a child whom hours earlier we cooed and awed at. You don't just "move on" - not from a day like that. You change entirely.  And in conjunction, you slowly grow your "sadness muscle" so you can carry it all with you - because you don't get a choice. Strength does not come from joy.

I remember that little smile that morning. I lament we didn't get more - that was the first. I remain grateful for that smile...but to love is to want... I wish I had more smiles to "lean on" as I do Marie's laughter.
--

Twice in one day the phone would bring us news of horrible things, a heart stopping in our baby girl and our sweet sister's life being lost in a fall from a high place in the woods. This spring, this May, I watched it again - even as I know it is over - but this is the first time I marked the days and "watched" it play out.

On the other side, after this anniversary of death - perhaps I'll have changed, perhaps some bit of release and relief will come between the first and this second time it all happened. But in truth, I'll be walking on the very same path and with many cruel moments still to come, as Gwen and Marie are not here and this time I don't have shock to "protect me."

I am at once always devastated, always so sad - and I've lost before - but there is something about those younger than you - the "love roots" are entwined differently, they rooted into the bottom of my heart - whereas those older than me, I was rooted in theirs. They left "late enough" that I had completely established my own depth of roots, separate, mostly from them. Their loss tore merely from the top of my heart - I still think on them, still wish them to be here, I still love them and treasure their memory... but those rooted deep at the bottom of our hearts, those we watch grow up - they are ripped from the deepest place in hearts and pulled through, entwined with your roots all the while being torn mercilessly.

And three times in one year. We are worn out. I just feel worn out. And I just want them back. I'm not strong...

I loved those we lost. "To love is to want" - I'll accept there will be no peace to be found regarding their sudden absence and the trauma of how each left...and I'll keep loving them and wanting them back in our lives. And as your gain no strength from joy, I'll keep getting "stronger" in a way no one ever wants to. I wouldn't trade this for a thing, I know, I know - this is the cost of having had them in our lives - and they are worth it - I wouldn't have wanted to not know them... but even so, their losses are what they are - tragedies - and always will be.

It is over, and yet, it is never over - it is always open-ended, always heavy.

"There is no more ridiculous custom than the one that makes you express sympathy once and for all on a given day to a person whose sorrow will endure as long as his life. Such grief, felt in such a way, is always "present," it is never too late to talk about it, never repetitious to mention it again."

-Marcel Proust

---
There you were, and it was like spring
like the first fair water with the light on it,
hitting the eyes.
Why are we made the way we are made, that to love
is to want?
Well you are gone now, and this morning I have walked out
to the back shore,
to the ocean which, even if we think we have measured it,
no final measure.
Sometimes you can see the great whales there,
breaching and playing.
Sometimes the swans linger just long enough
for us to be astonished.
Then they lift their wings, they become again
a part of the untouchable clouds.

- Mary Oliver

---

 The last photo taken of the Carpenter kids. It was at their Grandmothers funeral. I was 21 weeks with Gwen. 

Marie and Gwen are right next to each other. Missing is Aunt Liz and little cousins 

Lily Kate and Charlotte...so sadly, it's not everyone. But it's lovely we have this.

The last photos I took. Last ones of Gwen. 

Last one of daddy and Gwen, mommy and Gwen and big-sis and Gwen. 

Taken in the end of April and May. 

The Broken Chain

Little I knew that morning, God was going to call your name,

in life we loved you dearly, in death we do the same.

It broke our hearts to lose you, you did not go alone,

for part of me went with you, the day God called you home.

You left us beautiful memories, your love is still our guide,

and though we cannot see you, you are always by our side

.



Our family chain is broken, and nothing seems the same,

but as God calls us one by one, the chain will link again.

-Author Unkown

-------

Life is an opportunity, benefit from it.

Life is beauty, admire it.

Life is a dream, realize it.

Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

-Mother Teresa 

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4

"Thursday before..."

A song for today, listen here

A video that someone made - that speaks perfectly how this year has been, how I am now...and my thankfulness always to the care extended towards us - as the narrator says:

"I'm so thankful to those who without you my tragedy would have been unbearable. To those who were around me to hold my hand and catch my tears...thank you"
Watch it here: When A Baby Dies

And so many thoughts.

Notes on Grief- as I try to step out and observe it - it has gotta be the strangest human "thing." Are we that egotistical or is it that we do love that deeply and our love reflects its s Divine Source... when I think on that I do feel better. It's only Love and it can nearly kill you.

Sometimes I judge myself, but then I recall that a West Point grad/a five-star general/American President found himself undone by child-loss: "That was and still is the great disaster of my life - that lovely,  lovely  little boy... There's no tragedy in life like the death of a  child. Things never get back to the way they were," explained Dwight D. Eisenhower.

Recently I met a little girl and yet, never met her in person as I had hoped - I instead went to her funeral service. It was a Catholic service. The last Catholic service I attended was my dear Grandfathers, years ago, and I never forgot how surrounded by God's Grace I felt - I remember being glad to know that was where my Grandfather went every week - that that was who his Priest was - he had a good church.

This tiny little baby's service moved me as much. The Priest spoke with complete confidence - saying something along the lines of, either we are all duped by some big hoax, either it is true or not (God) and she is either with God and now a Saint watching over or not, and then if not, at least she is not subject to being fooled like all the rest of us still here.

At another point in the service he exclaimed calmly what he believed with assurance,

"she is with God now - who loves her more than her parents were willing to love."

I could feel that one. Wow. Now, there is a way to speak of heaven on no small wishy, washy terms - and it got me thinking, the whole message of the Bible, is how all of this is not even about us - but about God not wanting to loose us and about God existing for his own Glory - for His sake. He didn't want to loose Gwen far more than me - according to scripture. So the promise I am given in this painful place of longing - is that has been taken care of... and not even for my sake.

In the meantime - to be honest, I'm borrowing all the Faith I can - as it's all too good to be true, I need it so badly that I don't believe a word of what I say to myself. It's all too convenient - to talk about a happy ending. I believe it more if you think of it on a level far beyond us, as I mentioned above - but for now - I just know that despite all the pain, there still is much beauty and I know the "darkness" is the smallest measure of man - and yet it is what human nature excels out, finding ways to feel and stay down. So I can "get through" this even while I'm in it and be okay... and if you have Faith then I'll borrow yours, I'll believe you for now and in the mean time, the only thing I know for sure is you gotta try to "make hay while sun shines."

And back to humanity and my narrow little world -back to observing my "grief"- what has surprised me there is so little control in it and much of its power dwells in  your sub-conscience (I'm sad now simply in response to the weather - my senses recall a baby in the spring - and all "shock" has worn off - I feel her not here more than ever before). I can't talk myself out of it - and I also don't believe I should - I need to somehow, live it again but for the first time with foreknowledge - it's part of facing reality.

And it is like I'm loosing her again. And today, this Thursday is the hardest I believe. This week...all the "last days" of her life, and today, the last full day we had together - last days of peace and no trauma... and knowing it this time around, that a year ago this Thursday would be my last day and night with tiny, little, Gwenyth Graham. That, also, we would get a call about Marie the next day... a confusing message from Myers' grandmother that ended with, "I think she's dead..."

I recall Lil in her bed -the "Thursday before" - waking up from her nap. I told her we were all going out to a plant nursery. Somehow the subject came up of leaving Gwen behind - I explained to Lil that Gwen would be sad if we did that and that no I wasn't going to leave Gwen, she was coming with us.

We were living normal life - Lillian was learning about having a sibling and I was busy with two kids and a house- and hoping to get some plants in the empty places in our garden beds, I picked Myers up from work and off we all went...and Gwen was dying all the while - she was sick and I didn't clue in.

A tree now stands in Gwen's memory here at our arboretum. The plaque is there with her name on it (I've not seen it yet). It's a tree I stood at, at the nursery, looking at and admiring while holding Gwen in my baby carrier, while Lil played in the puddles around the nursery. It is a Butterfly Japanese Maple and I stood beside it holding Gwen the day before she died.

Yes, she died on the 14th, but she died on a Friday and today is the hardest day, I think. I remember the Thursday before...
------