Thursday, September 16, 2010

Our Baby Blue Devil

Baby Hawk is going to Duke!  When the diagnosis of hydrocephalus was confirmed, I started doing some research on treatment and options.  What I found was that there is not much out there.  There is no cure for hydrocephalus and the shunt surgery used to treat it hasn't changed in the last 40 years.  Although the surgery is successful in relieving the pressure put on the brain, it comes with a whole host of complications including shunt malfunction and infection.  And in the end, the shunt relieves pressure but doesn't repair any damage that might have been done by the pressure.  We knew from the beginning that the amount of pressure on Aurelia's brain was significant.  Of course, we still don't know what that will mean for her long term and we're slowly checking things off the list as we meet with specialists and as she passes milestones (i.e. we know she's not blind, we know she can hear, we know she has movement in all her limbs, etc.).  What I was looking for was something we could do to give her whatever intervention she might need to repair whatever brain damage had been done.

So, I googled "fetal hydrocephalus treatments" and found this website: Fetal Hydrocephalus.  As I read through the information provided on this site about caring for infants with hydrocephalus that have gone through the shunt surgery, I became increasingly interested in the cord blood therapy discussed on the website.  Before finding this site, I didn't know anything about cord blood banking beyond seeing a few advertisements for places like ViaCord in pregnancy magazines.  The theory behind the study being done at Duke is that the stem cells found in a baby's cord blood can help regenerate damaged cells.  The therapy is fairly straightforward since the blood being transfused is the baby's own blood.  There is no chance of rejection and it is a simple proceedure.  It only takes a few hours for the blood transfusion.  In fact, it sounds like the intake the day before the transfusion might take longer than the actual transfusion. 

After reading about the therapy, spending a lot of time in prayer, and speaking to several health care professionals we respect and trust, we decided to contact Duke to see if Aurelia would be a candidate for this treatment.  A week and a half before she was born, we got the thumbs up from Duke and were overnighted our cord blood collection kit.  When she was born, her cord blood was collected and overnighted back to North Carolina.  And now we're getting ready to travel back to Durham in two weeks for the treatment.  We are very excited to participate in this study.  We've been amazed at how well everything has fallen into place (from hearing back from Duke to the fact that Joey's parents live near to the university).  And we are so amazed at the stories from other parents of hydrocephalic babies that have gone through this treatment.  We're excited to see how it helps our little lady.

I plan to update more details about the treatment as we go through it.  It's been hard to find time to update the blog since we've had Aurelia home with us.  As we get into a bit of a routine (a very flexible routine), I hope to be able to update more.  But we are so thankful that she is finally gaining a little weight (6 lbs. 9 oz.) and so thankful that she's starting to sleep more.  She is such a little blessing.


Anonymous said...

Hi Julie, It's Rebecca from the In His Time Group on TCOYF. I live in Durham so when you are here if there is anything and I mean anything you need, you let me know! Just look me up on FB, Rebecca Boyle Long. Congratulations on your beautiful little girl!

Anna, also known by some as Nong said...

Oh Julie...that is so exciting. I am so confidant this is what you should be doing. There is so much prayer going up for you three, I know your steps are being guided. Good for you for not giving up at the first sign of discouraging news, but pressing on and having hope for your little miracle. Thank you for continuing to inform and educate those of us that want to be involved with Aurelia's life. I really appreciate it. Love you so.

Dawn said...

That's amazing about the Duke study. I hope all goes well - saying a prayer for you now. :)