Does anyone else have mixed feelings with all the press about advances in stem cell developed organs? I have been reading about the woman who received a transplanted windpipe developed grown with her own cells and the earlier report on the development of heart valves for children and again and again I wish we had saved Wren's cord blood.
At the time it was a real option. We knew he had a heart problem and there had been early reports on heart attacks being treated with stem cells to restore heart function. I looked into it and received all the forms from Cord blood registry but then I decided not to. I think there were a number of reasons:
1) It is expensive. I think we were quoted $2,000 upfront and then an annual fee in the $100s.
2) The critics said that if widespread treatments became available one could receive donated cord blood from public registries.
3) The long term viability of cryogenically stored blood is unknown although widely held to be good.
4) Our cardiologist at the time said that Wren's heart condition (in utero) was not a factor in whether or not to store the blood.
5) I felt I was grasping at straws and not being realistic about the chance of it being needed.
But now I wish we had. Its not that the treatment is available right now or that the cells could not be obtained elsewhere (eg from his own bone marrow) or that they could be used. A friend told me that there are even companies that will bank your child's milk teeth when they fall out to secure the stem cells in them! Its just that having the cord blood banked would give me a good feeling, a hope that a development I had not anticipated and cannot control would come and perform a miracle. I would like to have that straw to grasp at and imagine as I lay in bed at night.
Do you think I could make Wren lose his teeth early if we needed them? Get some calipers?
Are there any other parents of kids with bodgy heart valves who are watching these developments with hope and dread? Hope that our children will qualify for a 'native' grown valve that will make all these nightmares go away and dread that we blew it by not storing blood or the technology won't be ready or tested soon enough or will take a decade for FDA approval and then we'll have to go to Spain or Japan or England and camp in the street when we get home (because we'll have sold our homes to pay for it overseas).
I think I am still feeling post-surgery anxiety and its looking for something to hang on, right?
6 comments:
I'm so familiar with being consumed with worry. In my strong moments, I think of my faith in everyone around me...Elijah's doctors, surgeon, my husband, myself, God.. Once I think of this, my mind is (usually) put at ease and things fall into place more peacefully in my head. Everyone is doing the best they can to give your little Wren the best life possible. Trust in that, and peace will follow.
Here is a little poem that sits next to my desk. I look at it at least 20 times a day, whenever "bad" thoughts start to creep in:
Let Go
As children bring their broken toys - with tears - for us to mend,
I brought my broken dreams to Him because he was my friend.
But then, instead of leaving Him in peace to work alone,
I hung around and tried to help with ways that were my own.
At last I snatched them back and cried,
"How can you be so slow?"
"My child," he said,
"What could I do?....
You never did let go."
I think I envy people their faith in a higher power. It must be easier to have some sense of order and being able to trust in God's good plans. Even so, I know its important to trust in other people (I do, in my friends, doctors etc). However, its for the longer view that faith really helps.
Thanks for sharing your inspiration. Even though I can't embrace it wholeheartedly I can see the wisdom.
I don't worry too much about not having saved Drew's cord blood. At least not yet. I guess right now I just feel that there are other options. He can have another homograft or a pig valve until science gets to the point where they can make one out of the stem cells he has still inside of him. If stem cells were the ONLY option to extend his life and I had not saved his cord blood, then I don't know how I could live with myself.
Shannon,
All I can say is...
You are making the best decisions you know how to make based on all of the information/research you have received. It would be impossible to know exactly what the best method/treatment would be and what the final outcome will be with them. You are doing the best you can for your son and that is all you can do! Personally, I am so impressed at how proactive you are and I know you go to great lengths to find out all you can about his condition and what treatment options are available at the time. Wren is blessed to have such a great mom!!
This is coming from someone who is jumping on that tooth-banking site…but I understand why you wish you banked Wren’s blood. It represents the closest we can get to solving their hearts permanently and perfectly (oh, how I wish). But we donated Evan’s cord blood also. Banking it didn’t feel right for us at the time. I would take heart in those con arguments you wrote out, since they still hold true.
I also envy those with strong faith to hold on to. Living right behind the Unitarian church on 35th…I am contemplating visiting them during the holidays.
Good luck tomorrow.
Here's my 2-cents worth: by the time Wren loses his milk teeth (naturally, without the aid of invasive pliers!), maybe it will be slightly clearer whether storing tooth stem cells is a worthwhile prospect. Science is making breakthroughs all the time...
So rest assured that you have another 4 years or so before you might need to tackle this particular decision. (From what I understand of Wren's situation, he shouldn't be needing a new valve within the next 4 years, right?)
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