We had previously banked our daughter's cord blood with the Cord Blood Registry and so
we receive their newsletters via email. Normally I just delete them, but for some
reason I read the one that came out about two months before Owen was born
(Owen's Guardian Angel found him early it seems). It said
that some promising research is being done in using cord blood stem cells to treat
pediatric brain damage. Through the wonders of Google and the
internet I was able to trace this research back to a Dr. Joanne Kurtzberg at
Duke University
Medical Center. I got in touch with Dr. Kurtzberg and she said that while the treatment
had never been tried specifically for hydrocephalus, there was sufficient enough promise
in the treatment to make it worth the attempt. You can go
here
for one of the case studies, and click
here for a
story on CNN about Dr. Kurtzberg's research. In March 2008 NBC covered this
research on the Today Show and on the Nightly News. You can see the Today
Show segment here.
The blood contained in the umbilical cord of a baby contains stem cells. These
types of cells are special because they can become other types of cells and so are
used as "building blocks" in the body. Once the umbilical cord is cut the
supply of stem cells to the body is also stopped. The existing stem cells in the
blood supply are either used or die off within a fairly short time.
If you collected and preserved the cells
at the time of the birth however, then you have some of these cells that can be
reintroduced at a later time so that they can go in and do some repair work.
They can't cure the hydrocephalus and create a path for CSF drainage where
none exists, but they may be able to help replace the cells that were
damaged due to the pressure in the womb.
We knew that there were no guarantees, and that there would be no way to ever know if
the stem cells had actually helped. We also knew that there was almost no risk in the
procedure because they were using his own cells. We decided that if there was even the smallest
possibility that this procedure would help, we were going to do it. Owen's physical
therapist swears that she has never seen a child with such severe hydrocephalus that does not
have muscle tone problems, and yet Owen has none. Is this because of the stem cells? There
is no way to know because there was a theoretical chance that this outcome
could have happened without them. It wasn't likely, but it was possible and so there
is no way to say absolutely. But in our minds, it doesn't matter. We did everything we
could, gave him every possible chance - including this treatment, and that's all you
can do as a parent.
I would also like to put in a note about genetic conditions such as
x-linked aqueductal stenosis, or the Trisomy conditions (Down Syndrome,
Edward's Syndrome, Patau Syndrome, etc). These conditions cannot be helped
by a cord blood infusion, because the DNA of the cord blood will contain
the same error as the rest of the child's DNA. For certain conditions,
there are specific reasons not to do a
cord blood infusion. Down Syndrome (Trisomy 21)
carries an increased risk of leukemia and infusing more cells which might
carry the leukemia could worsen their condition. Some of the other genetic
conditions often carry with them such severe problems,
which cannot be helped by cord blood, that an infusion is not likely
to make a real difference in the prognosis.
It is NOT possible to use cord blood from a donor for this procedure,
not even from siblings or even twins. The reason for this is that in order
to use anyone else's cord blood the child would have to go through extensive
chemotherapy to completely suppress their immune system to prevent rejection.
If the child has a disease that will almost assuredly end in death such as
cancer then it is worth the risk to find the closest match possible and then
suppress the immune system. If death is not the only possible outcome without
the treatment then it is not worth the risk of using someone else's cells.
I also cannot give you the details on cost here because every insurance company
has their own contracts with Duke and their own negotiated prices. Many
insurances do cover this procedure, ours did, but then again many do not.
Each person will have to contact Duke directly to find out if a deal can be
made with their insurance company. Even if you don't have insurance they will
help you with often extremely extended payment plans and such to make it possible.
If you are interested in doing this then you will need to contact Dr. Kurtzberg's office
at (919) 668-1119. She is the only one in the world that is offering this procedure
for hydrocephalus that we know of. If you live close enough to Duke (Durham, NC) to
deliver there, that is the best method. The cord blood is collected at the time
of delivery and stored there until after the shunting is done. Within a few days of the
shunting, the stem cells from the cord blood are infused back into your baby.
If the birth and shunting were done at Duke they can use the IV's that were put
in place for the surgery and they won't have to insert them again just for this procedure. If you
do not live close enough then you can get a kit, similar to those provided by the
commercial cord blood banking companies. Since those kits are so common now, most
OB's don't have a problem with the collection procedure. The cord blood is then
couriered to Duke and put into storage. When your baby is strong enough you would then
fly or drive to Duke for the infusion. If your child has already been born
and you banked the cells with a commercial service such as the Cord Blood Registry
or Viacord then Duke can work with them to transport the cells and use them
at Duke.
Infusions for Babies with Hydrocephalus
Owen
Owen had his infusion on October 3, 2006, 5 days after his shunting.
Owen's infusion was the first done specifically for hydrocephalus, but it
was not the last. Since then there have been several other babies that
have had it done.
Dr. Kurtzberg is the woman sitting with Owen on the right, taken when
we went down for Jameson's infusion. She has been the
most wonderful person to have in Owen's life. We visit every time we
go back to Duke for our checkups and she has had many great suggestions about
care for Owen. She is a person who cares deeply about the children that she
works with.
Jameson
Jameson came all the way from Idaho to get his infusion on September 4, 2007.
He was
just two months old when his family made the trip to Duke for the procedure.
Owen and I drove down to Duke to meet them and see their infusion.
Owen tried to eat Jameson's shirt and they made fast friends. They
are a wonderful family and it was great to meet them.
Elisabeth
Elisabeth came all the way from Washington state for her infusion on
November 6, 2007.
We tried to get a picture when both of the babies were completely awake, but
the best we could manage was to get one when they were only half
awake, or maybe more than halfway asleep in Owen's
case. Elisabeth's infusion was scheduled for the same day as Owen's checkup
so we were lucky enough to be able to meet her wonderful family.
You can read Elisabeth's family blog
here.
Elijah
Elijah was born on December 20, 2007
at Duke and had his infusion a few days later on December 26, 2007. Elijah and his family live very
close to us, right on our way home from our daughter's school and I have enjoyed
getting to know them. After he came home and got settled in, we stopped in
for a visit. The two boys were just too cute together!
You can read Elijah's family blog
here.
Owen - Second Infusion
On February 19, 2008 Owen had his second infusion. When he was born they were
able to obtain three separate "batches" of cells. The first was given
soon after he was born. The other two batches were saved just in case
he showed signs of delays later on. At 16 months old he is physically doing
quite well but he still does not wave, do any mimicking, and has not
shown any ability to use even the most basic signs. It's an odd thing because
he is quite adept at manipulating toys and handles self feeding very well
given the head size issues. He is very social and loves to laugh, but there is
definitely a gap there in the intellectual development. These delays were
worrisome enough to make us think that it was worth a try with the second batch.
As with the first try, there are no guarantees and we may not ever know if
it helped. The cells may even at this moment be fixing some emotional problem
we didn't know he had, or giving him the ability to do calculus later on.
If he does suddenly start signing or waving or anything else that he
is clearly behind on in the very near future though, it will certainly be a more
clear change than anything we could have seen right after his birth.
**Update Note: Please see Our Story for an
update about Owen's progress since his second infusion. I said that if he started
to sign it would be a wonder. On that page you can see a video of Owen making his
first sign.
Kendal
Kendal was born on February 5, 2008
at Duke. She had her infusion on March 20, 2008 about a month and a half later.
Unfortunately they forgot their camera that day, but we have some beautiful
pictures of her on other days to share.
Cayman
Cayman was born on March 8, 2008 in Ann Arbor, Michigan. Their home is in
Ohio and they drove all the way from there for little Cayman's infusion
on April 15, 2008. You can read Cayman's family blog
here.
Mark
Mark and his twin brother Patrick were born on April 23, 2008.
Their family came down from Kensington, Maryland
for Mark's cord blood infusion on
June 3, 2008.
Matthew
Matthew Owen was born on May 20, 2008. They flew from their home in Lincoln, Nebraska
for their son's infusion on June 19, 2008. We were lucky enough to meet this wonderful family while
Owen was in the hospital for a shunt infection and we got a picture of the two boys
in Owen's crib.
You can read Matthew's family blog
here.
Parker
Parker was born on August 26, 2008.
Her family came from Oklahoma
for her cord blood infusion on
September 29, 2008.
Bryleigh
Bryleigh Marie was born on January 5, 2009. She and her family flew from Dallas, Texas
for her infusion on February 17, 2009.
You can read Bryleigh's family blog
here.
Joey
Joey was born on April 23, 2009 at University of Kentucky Hospital in Lexington,
Kentucky. His infusion was done on June 9, 2009. Joey's Mom says that she would
recommend for anyone who is able to do this procedure because
if her son has any developmental issues or delays she knows that she did everything
possible to help him.
You can read Joey's blog
here.
Parker and Kendal
In the entries above you will see the first infusions for
Kendal and
Parker.
On August 4, 2009 both girls came back for their second infusions and as an
added bonus they got to meet each other!
Parker
Kendal
The Two Beautiful Girls Together (and their Mommies!)
Jared
Jared was born on September 10, 2009. He and his family
came down from Pennsylvania
for his infusion on October 27, 2009.
You can read Jared's blog
here.
Lexie
Lexie was born on December 23, 2009.
Her family came all the way from Texas
for her infusion on January 18, 2010.
You can read about Lexie and her family
here.
Maddox
Maddox was born on July 14, 2009. The picture on the left is from his first cord blood infusion
in February 2010, and the one of the right is from his second infusion on July 27, 2010. His
family traveled from Texas. You can read Maddox's story
here.
Madeline
Madeline was born on March 12, 2010 and came in for her infusion on May 18, 2010.
Claire
Claire's family traveled all the way from Georgia to have Claire at Duke on
January 5, 2011. She had her cord blood infusion on January 18th.
You can read all about Claire
here.
Marlena
Marlena was born on December 7, 2010 and came from South Carolina in for her infusion on January 25, 2010.
You can read Marlena's story
here.
Tessa Hope
Tessa Hope and her family came from Idaho to have her infusion in February of 2011. You can
read Tessa's story
here.
Eli
Eli and his family came from St. Louis, Missouri to have his infusion on May 24, 2011.
Addison
Addie was born on May 20, 2011. She and her family flew all the way from Austin, Texas on
August 16, 2011 for her infusion. You can read more about Addie here:
here.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
