I am so discouraged!
Back in April of 2008 when I heard the dreaded words "mild Ventriculomegaly" I went on the hunt for a support group. I found the following website, http://www.i-am-pregnant.com/encyclopedia/Babies/Ventriculomegaly&page=1, and met many amazing women. One of those women was my friend Amy (aka. Turtlemom) that frequents Jude's blog. She had a beautiful daughter Parker, and she about the same age as Jude is. Once Amy's daughter was diagnosed in utero with hydrocephalus she researched banking her daughters cord blood. Jude did not present with hydrocephalus, but rather what looked like a lack of brain (cortical thinning). I never ran across information on stem cells helping Jude in anyway. Amy, and I have kept up with each other because our children's situations are similar. Although, I must admit she has kept up with Jude's blog more than I have with Parker, and I am ashamed of that. I am now 100% to date with Parker's story. You see Parker also has bilateral schizencephaly, she has 2 cysts in her brain, and she had severe visual loss. Now? After the stem cell infusion.......... she is crawling, sitting, babbling, and she has her vision. That folks is amazing, and I am thrilled for her family. So sweet Amy emailed me asking if I had considered the stem cell option for Jude. I did consider this, and I asked prior to Jude being born if I should bank his cord blood. The doctor said we could in case of illness, but that it would be of little help to his brain damage (little did he know). I still wanted to bank his blood, but honestly with everything going on I did not. It was very expensive, and I think I was just overwhelmed. Parker's infusion was done fairly quickly after birth, so I am unsure if this has a lasting impact vs stem cell infusion later in life. That is a question I need to pursue.
So I called Duke university this morning, and talked with them about the program they are running. It seems Jude most likely would have qualified IF his cord blood had been banked. They would have used his cord blood to do a stem cell infusion. I then asked them if we can get donated stem cells, and they said no. My next question, was sibling stem cells, but she explained that at this time they cannot use sibling donations. I then asked her if she knew of another research program in the US, or beyond that would accept donated cord blood, but she didn't. My heart sank.
So what benefit are stem cells? Well Amy sent me this article about stroke recovery, and it's rather fascinating http://neurosurgery.stanford.edu/about/stemcellsfillgap.html. I plan on contacting the doctor to see if he has any suggestions. My understanding is that the stem cells can actually improve recovery. They are special cells that can become other types of cells, and work as building blocks within the body. There is no guarantee, but if your child had brain damage and even had a remote possibility of being able to walk, talk, or sit because of a low risk procedure, I am sure you would do it.
So would I have another child if they could use that child's cord blood? YES, it's a no brainer. Have I been scolded that I don't have the finances for this, yes. Although when it comes down to your child, and possibility improving or saving their life ........ well what's the question....you would do it. We would hope that we would have a healthy normal child, and be able to help Jude at the same time. Could I give Mike a normal baby? I would hope so, but the pregnancy would be FULL of stress and questions, although the child would be very loved. In the end there is no question, if there was a possibility this would help Jude, we would MAKE IT WORK. Second jobs, whatever it took......we would make it work. The possibility of this happening is very remote people, so I don't need opinions on it. My maternal side of my family has wanted me to have another child for a long time, but honestly I didn't want to. Would I have an issue with having another child? yes, and no. I have gotten myself in the mind set that this will not happen for various reasons, and I am very comfortable with that. So either way we would do what we needed to. I would stress about finances, because we owe so much in medical bills right now. Although, we are in a different situation now because Jude is receiving help through MDCP. Anyway, like I said......remote possibility, and as of right now no possibility if there are no programs out there. So let me stress as of right now this will never happen, it's just me working thoughts out in my head. I guess it's me dreaming of helping Jude.
I am very uneducated when it comes to stem cells, and maybe someone reading this would have more insight. I do know that in certain situations stem cells cannot be used. Anyone having a chromosomal deficiency cannot use their banked cord blood because the blood carries the same error the DNA has. Also in some situations when a child is sick, it will infuse more of the problem back into the child. Although Jude's issues are not chromosomal or illness, it's all due to the stroke. It's all very fascinating though, and amazing that the medical field can provide this treatment to others. Yesterday I learned that Max http://lovethatmax.blogspot.com/ will also be receiving stem cell therapy, and I am crossing my fingers for Ellen. Regardless, of what may happen to Jude in the future I think the possibility of these children having a chance at even partial recovery is WONDERFUL. There are no guarantees, but I will continue to hope for the best for them.
In the end I will pray, and hope that somewhere down the line Jude can benefit from this amazing procedure. I will continue to research, and follow programs that offer this. I will also not accept the immediate advice of some doctors that may not know the full benefits of stem cells. Jude may never profit from this new research, but we can still keep up with it, and see what advances are made. I can also kick my own butt for not following my own mothers intuition, and finding a way to bank the cord blood. That very well may be something I regret for the rest of my life.
To see the progress little Parker has made please visit her video here: http://www.youtube.com/watch?v=2P8LTCQkaGI. Her mom said she still has her coned shaped head, but she looks just beautiful to me!
Now there is my long rant for the day, and the emotions circling inside of me are many and overwhelming today. I have regret, a little hope, and just pure fasicination. Since Jude was diagnosed my life is no longer simple decisions. My life seems to be full of situations that wreak havoc on my brain at times. I am not just talking about the cord blood, because the possibility it may have worked could be zero. I guess it's just life in general. Sometimes it just isn't easy, but sometimes it's great. It's just the never ending tug of war between the two sides.