 |
To Transplant and Beyond |
Donate Now |
| Home : About Us : News : Personal Stories : Procedures : FAQ's : Talks : Photos : Guest Book : Contacts : Fundraising | ||
Donors Artificial Heart Heart Transplants Adults Heart and Lung Domino Transplants Lvad's Carers Story Waiting For Transplant
|
I have 3 beautiful children of which 2 are perfectly healthy. My third child, Emma Grace, was born with cardiomyopathy. I will have to start at my sons 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. 4 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 3 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 4th 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, and 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 2 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 Gods 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 2x a week. She was born on July 4 by emergency Csection. 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. She was sent to All Children's Hospital in St Petersburg Florida (at 15 days of age) 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.... it took 4 months almost to the day of living in the hospital. Emma never came home in those 4 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... I pray He blesses them in ways they will never understand...Because of them my daughter is alive. Transplant Cardiologist In the midst of this I have learned so much about my self, 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 3 funerals, and 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! Wow, sorry that was so long, that is first time I have written that story since we have been home....I want also to share a poem with you that I wrote while waiting for Emma's heart.... The Heart of a Mom Her little body is so fragile She has the face of an angel So many tubes and cords We sit by the phone The pain is so great Her little body is so fragile Heather and Emma
|
"Don't let anyone tell you that you are too old.
|
My name is Heather George, this is the story of my daughter Emma, who received a heart transplant on October 2nd 2001 at the age of 4 months. At the end our story is a poem I wrote while waiting for a donor heart.
We went to the hospital and spent some bitter sweet 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 rubber maid lunch box... and the surgery began. lasting only 3 hours, it 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 3 days after transplantation and we heard her cry for the first time. She came home less than 2 weeks later.Registered Charity No 1106248 |