So my wife and I are going to take (well we think we are going to take) Tessa Hope to the University of Duke Medical center on March 1st. I say that we think we are going to take her because we are still in the middle of some testing on blood to see if Tessa is able to go. You see we banked Tessa’s Cord Blood at birth. Which, is kinda a crazy story in it self. So I guess I will start there.
Cord Blood is the blood that is in the cord to the baby belly. Cord Blood has DNA and Stem Cells which are a source of fear for many folks. Some people think that the use of Stem Cells is a playing with God. But I say that the cells are her cells so we will use them. So we found out that we would have Tessa on a Thursday. H was able to find a cord blood bank that was able to overnight a cord blood kit to us. After a 2k investment we were good to go to store her blood. We really did not know why. But we though it was a good idea because the DNA and stem cells may be able to help her down the line.
So down the line we found out that there is a Dr at the University of Duke that we will call Dr Ku…I think I used Dr K in old posts. So Dr K is like the only person in the world that is using Cord Blood to treat hydro. The thought is that the cells can go beyond the blood brain and heal damaged tissue. Please note this will not cure her Hydro in any way. Tessa will always have Hydro and need to be shunted all her life.
You can read more on what Dr Ku is doing at: http://www.fetalhydrocephalus.com/hydro/Infusions-1.aspx
So today we sent off a sample of Tessa’s DNA to Duke. The Cord Blood lab will then send a sample of Tessa’s blood to Duke for comparison. If all goes well then we are on for a trip to Duke on March 1.
Tessa will be baby #31 that has ever had this cord blood infusion done. How crazy is that? It is a very cool thing but like they say in the 80′s it is very heavy. The infusion is very simple, so we really do not worry that things will go wrong. We will only be in Duke for 3 days then back to Idaho. Duke will check in on Tessa every now and then and we may need to go back to Duke at some point for follow-up. But the cool thing about all of this is that we are doing “everything” that we can to help our little gal. I must say that I am very proud of H and I for doing everything that we are able.
I think that a lesson can be found in Tessa. Many folks say that she should not be here. I am still learning what the lesson is. Maybe it is Faith, or Hope, it could be just Strength. She continues to teach me and remind me that she truly is not my child but a child that totally belongs to God. All I can do is my best to do everything that I am able for her but God is responsible for taking care of her.
I am sure that I will have more updates on Duke soon. It will be a crazy process.
I also have hydrocephalus. I am 19 yrs old and I was born 6 wks premature. When I was born, I had a grade 3 bleed on my brain, my twin brother also had a bleed but not bad. I was shunted shortly after birth. I have been diagnosed with epilepsy and hydrocephalus. My first shunt revision was at the age of 10 b/c the tubing needed to be lengthened. The rest of the surgeries I have had (15 in all) are due to blockage in the shunt system. I am glad to hear that your daughter is doing well. There is going to be some tough times and some easy times in taking care of her hydro. The one thing I would like to tell any parent that has a child with hydro is to NEVER show signs that you are aggravated in the hospital. I recently had a headache and we went to the hospital. It came back that it was a migraine. My father got a bill in from the hospital and told me “Next time you have a headache you better be sure that your shunt is malfunctioning.” This is the reason why I sneak a Tylenol for every headache that I have, and if the headache doesn’t go away, then I know that it is my shunt. When your child gets older and is able to tell you when she has a headache, do not tell her what my father told me. It will be better for you and her in the long run. Even if you have been siting in the ER for over 9 hours and you are still waiting on results from the x-ray, do not show signs that you are aggravated. This will only scare her and she will be afraid to come to you whenever she has a headache. She needs to know that she can come to you whenever she has a headache and that you will take care of her and not worry about whether it is just a “normal” headache or if her shunt is malfunctioning. Often times it is hard to tell when the headache is due to the shunt or if it is just a headache. I wish you the best of luck in your journey and I hope that you have more luck with shunts than I have had in the past.