Three Ghosts

The Ghost of Heart Defects past….

I am beginning to feel a little better about him now, but he is still on the critical list….He will have to be operated on again, but unless it is a case of having to have the surgery as soon as possible, it should be several years. We have been here a long time and it seems like we have a long time to go. Keep writing when you get a chance because it does us good to get mail from home. (Copied from a letter to my grandparents from my parents, February, 1967)

The Ghost of Heart Defects present….

Things with Isaac’s recovery have gone very well. In April, his cardiologist told us that Isaac was doing great and for the first time he told us that Isaac had “no restrictions”. I couldn’t believe it… I could go on all night raving about how wonderful he is, but the real point of this is to let all of the other heart families out there know that there is hope for your child as well. Isaac only uses 1/2 of his heart since his Fontan and yet no one even knows he is sick. (Copied with permission from the blog of a Heart Mom, July 2010)

The Ghost of Heart Defects yet to come…

It was amazing, Dad. Little Freddy was so blue when he came out. They slapped him on the bottom and he didn’t really cry, he just gasped for breath. They strapped him down to this little board – strapped him down so tight that he couldn’t move – and the first thing they did was jab a needle right into his chest. That made him pretty mad, and it didn’t do me any good either. If that wasn’t bad enough, they followed that up with another injection, and they put Freddy’s umbilical cord in a sterile container and one doctor left the room with it. They told me later that the first injection was stem cells, and they injected them directly into the heart. The next injection was either genes or entire cells, I’m not sure which, but the doctor called it “NRG1”. They say that the stem cells will repair his heart very slowly, and the NRG1 will help speed things up. They say that Freddy is going to need a heart valve, so they took his umbilical cord. They will harvest the stem cells there and build one in the lab for him. And when they replace it, the doctors won’t cut him open – they will put the valve on the end of a little tube, and push that tube through his blood vessels to his heart. Then they will just pop it into place. (E-mail that will hopefully be sent at some time in the future; all of these technologies are being developed today.)

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One Response to “Three Ghosts”

  1. ashleyburgess Says:

    One of my favorite entries yet. We really do have hope of the things yet to come! By the time Eva’s ready for her transplant (hopefully not for another 20+ years), there’s no telling what options we’ll have!

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