Saturday, October 1, 2011

A New Direction

So Chaia is on the verge of celebrity status at the Cleveland Clinic...for two reasons. First, the nurses and respiratory therapists are obsessive about her long eye lashes.

Second because they've never seen anything like what they are seeing in this little one's body.

General Arterial Calcification in Infants (GACI).

That's the diagnose. Google hardly knows what this is. And the same goes for the doctors.

Chaia is one of 180 known cases of this genetic the world.

Basically her arteries are calcifying and not working the way they are designed. Her heart was the first place of calcification and it is happening a little in her stomach as well.

The good: diagnosis answers a lot and helps us focus in on one thing rather than guessing at a dozen things. Also, it is a bit of a miracle that the geneticist at the Cleveland Clinic would be able to hit on something that is so rare. Also good is the fact that there is a treatment (which we've started) that has been successful in reversing the calcification and allowing a long and healthy life.

The less than good. Survival rate if untreated is almost nil. Doctor said that we are lucky that she made it out of the womb and that most will die by 6 months without treatment. Chaia's heart has suffered significant damage in this journey. It is unclear to this point what parts of her heart are 'dead' and don't function anymore versus what parts of her heart are 'hibernating'. The head of cardio shared that some interesting new studies have shown that hearts that have been deemed 'dead' or non-functioning, have actually in some cases been alive, but in a type of low functioning, barely evident way in order to recuperate and heal. Especially in an infant, the potential for rebound and restoration is present. If the heart has suffered too much, then we begin discussion on heart transplants.

So we know some ways to pray...I ask for you to join me in a 5 finger prayer. Just hold up one finger for each prayer to God.

1. Thanksgiving that God would deem us worthy to endure a trial such as this and that we would seek with Joy to allow perseverance to complete its work.

2. That Chaia's heart would de-calcify and that doctors would drop to their knees in awe of the healing that God has done.

3. That Chaia's heart would drastically recover and all would point to the glory of God.

4. That Chaia's other vital organs would be untouched by calcification.

5. That Shaina and I could find hope. The outlook is hopeless apart from a God who raises dead things back to life.

I wrote a song awhile back about what God did in my life through my dad's heart attack and passing. The lyrics are appropriate.

Out of death
Comes Vibrant Life
Out of death
You Make all things right
Out of death
Victorious Light
Out of death
You call us your bride

Breathe your breath on us O Lord
These dry bones need to be restored

End of the song:
You make our dead hearts beat again.
You make our dead hearts beat again.


Mama Karen said...

Ben and Shaina, I am friends with Alicia whom I first met at Malone where my son also was a student. I have been praying earnestly for your sweet little Chaia! I have been speaking LIFE, LIFE, LIFE over her since I first heard of her problems. I just sent an email out to our church's "KNEE Mail" prayer list. We have seen God do miraculous things amoung our church and we join you in prayer! I encourage you in Jesus today knowing that we know a Healer! God has put the song "I lift my hands to believe again" by Chris Tomlin on my heart during all of this. Let it be an encouragement to you as you read these words...

Be still, there is a healer
His love is deeper than the sea
His mercy, it is unfailing
His arms are a fortress for the weak

Let faith arise
Let faith arise

I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart, these things I remember
You are faithful, God, forever

Be still, there is a river
That flows from Calvary's tree
A fountain for the thirsty
Pure grace that washes over me

So let faith arise
Let faith arise
Open my eyes
Open my eyes

I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart, these things I remember
You are faithful, God
Faithful, God, forever

Anonymous said...

Ben and Shaina, so thankful there has been a diagnosis and now specific treatment has begun for Chaia. We have prayed, and will continue to pray your 5 finger prayer. My mom and Allan have their church in GA praying for you, too, as well as so many of our friends and family. We love you all and continue to pray for strength also. I can't help but hear Shaina's voice singing "Oh How He loves us" over and over again in my head as I go through the day. I know He will take care of all of you. Love, Sharon and Bruce

Chrissy Pope said...

Dear Ben and Shaina,
I used to work with Mary Beth. I wanted you to know that my family and the prayer warriors I know are lifting Chaia and you both up to the Lord. We serve a Savior who can do miraculous things. Today I am praising Him for a diagnosis for Chaia.
Love in Christ,
Chrissy Pope

Anonymous said...

Ben and Shaina I work with Beth in Bluffton, at the school. I'm praying for your beautiful baby girl...