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Emma's New Heart

written by her mama, Heather George

My name is Heather George, and this is the story of my daughter Emma, who received a heart transplant on October 2, 2001, at the age of four months. At the end our story is a poem I wrote while waiting for a donor heart.

I have three beautiful children of which two are perfectly healthy. My third child, Emma Grace, was born with cardiomyopathy. I will have to start at my son's birth in order to give you all an accurate account of how Emma's situation came about.

When I became pregnant with my son Elijah, my OB informed me that I had pre-cancerous and cancerous cells on my cervix and would require surgery when my son was born. Four months after he was born I had 80% of my cervix removed and was told that child bearing would be near impossible for me.

Well, I became pregnant again three weeks later with Emma Grace. My first 23 weeks were pretty normal; nothing triggered any concern other than routine checks of my cervix. Then my husband was transferred to another city, and I had to change OBs. This was followed by a perinatalogist (high risk OB) visit due to my cervical problems.

I saw the Peri on April 4, 2001, . . . a day I will never forget. He said my cervix was fine, no problems there, and was wrapping up the sonogram, when I asked him if he could show me her face. When he scanned up to her face, he went across her chest and noticed the size of her heart--it was at least 75% of her chest. He told me I needed to go to a peri-cardiologist that day. I went and was told that my baby would die within two weeks due to massive heart failure.

My heart broke. I was told she had a disease called Pompe's which is a glycogen storage disease and results in death. Her heart was massive and not pumping properly. My husband and I went home that day loosing a piece of our innocence. Never in my life would I have thought I would be planning a funeral for one of my children, but that is exactly what we did--we planned a funeral for a child we hadn't held yet. We planned everything, the only thing left was choosing her name plate, which required me to choose her middle name.

After many tears and much anger, we chose Emma Grace, because, despite the pain and anger, we believed God's Grace was sufficient and would provide healing to our now broken family. I still did not have a peace concerning the news that my child would die; she was still very active and very much apart of my life. We decided to get a second opinion--and praise God we did.

Dr. Kleinman informed us that Emma did not have this horrible disease, but was in the last stages of heart failure. He informed us that he would do whatever we would allow him to do, but he could not promise us that she would make it to birth. He put me on 200mml's of digoxin and monitored her two times a week.

[emma_pre_op]She was born on June fifth by emergency C-section. She had to be put on life support as soon as she was born; her left lung was collapsed due to the largeness of her heart. We did not hear anything of transplantation until she was 15 days old. At 15 days of age, she was sent to All Children's Hospital in St Petersburg, Florida, and listed immediately upon arrival. We were told that the average wait was 14 days, and this would soon be over and we could start our lives again.

Instead, it took four months almost to the day of living in the hospital. Emma never came home in those four months, she never breathed on her own, and we never heard her voice. The Ronald McDonald house became our second home.

Then the call came. October 2nd, 12:47 AM. . . "Mrs. George, this is the transplant coordinator, we have a match!" My heart stopped . . . and I cried, not only for the gift of life that was now available for my child, but for the loss of life that had to occur in order for Emma Grace to live. I think about that family daily. I praise God for their strength, and I pray He blesses them in ways they will never understand. . . . Because of them my daughter is alive.

We went to the hospital and spent some bittersweet time with our precious daughter, and I have to admit as I kissed her head I had the fear that she wouldn't make it out. I held her tight and prayed harder than I had ever prayed before . . . keep her safe. The new heart arrived in a plastic Rubbermaid (tm) lunch box, and the surgery began.

Lasting only three hours, her surgery was one of the fastest they had done. She was only on bypass for 162 minutes. She came off life support for the first time three days after transplantation, and we heard her cry for the first time. She came home less than two weeks later.

In the midst of this I have learned so much about myself, my family, and my faith. People often asked me in the NICU, "How do you do it?" I would always reply to them, "I have no choice." I had to get up every morning and face the reality that had been dealt me, but I also had to get up and thank God that he gave us an option . . . many children have no options.

During our time in the NICU, we attended three funerals, and we witnessed one death firsthand. I learned to hold my children tightly, love my husband dearly, and trust the Lord faithfully. I have seen a miracle first hand, and I will never forget!

The Heart of a Mom

I sit by her bed
Watching her little body grow
Wondering what happened
And if we will ever know

Her little body is so fragile
Yet her soul is so strong
Her little heart is so tired
But her will pushes her on

She has the face of an angel
Who doesn't yet want her wings
She has the fight of a warrior
Battling what each day brings

So many tubes and cords
So many endless days
She cant take much More
Lord, please don't take her away

We sit by the phone
Praying soon they will call
But with that glorious moment
We know someone else's child must fall

The pain is so great
The anticipation so much more
But for each and every day
We thank you Lord

Her little body is so fragile
Yet YOUR strength is so strong
Her little Heart is so tired
But YOUR GRACE helps her hold on.

copyright by Heather George
Used by permission

You visit Emma's website at www.emmas2hearts.com.


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