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Sunday, December 10, 2006

Sasha Nicole

I have known my friend Ivy since elementary school (and we're OLD now, hehe!). She's a wonderful woman; I can't say enough good things about her. She and her husband Brandon have 2 beautiful little girls. Bella is about 4 months older than Elizabeth. These girls have been playing with each other their entire lives. Elizabeth just adores Bella and asks about all the time.

Sasha was born in June of this year. Poor Ivy attended Drew's funeral when she was pregnant with Sasha. I cannot imagine how difficult that must have been for her but she was there for me. That's the kind of friend that she is.

Shortly after Sasha's birth, there was an abnormal blood test. Luckily they had a doctor that was on-the-ball and more testing was done. It was discovered that Sasha was born with a condition known as biliary atresia. This is an extremely rare condition that occurs at a rate of about 1 in every 15,000 births. A lot of the lack of causes reminds me of CDH: it is not hereditary, it is a congenital condition, it is VERY serious, etc.

There is a lot of information on biliary atresia on the web but it boils down to the bile ducts in the liver do not develop normally in the fetus causing obstructions. Because of this, the flow of bile from the liver to the gallbladder is blocked causing liver damage, cirrhosis of the liver and eventually death (if not treated). MedlinePlus Definition

There is a temporary fix known as the Kasai procedure. This is surgery to connect the liver directly to the small intestine and bypass the ducts that don't work. This procedure does not always work. Sasha had this done shortly after her birth and it appears to be working. Her doctors have used the term "miracle" when referring to her, according to Ivy.

Eventually, Sasha will need a liver transplant. There is no way around it. Simple blood tests, not the in depth ones needed in the end, show that Ivy has the same blood type as Sasha and is a potential doner. Great news, right? Well, yes and no. One statistic Ivy found is that in order to handle a partial liver transplant from an adult, the child has to be about 40 pounds. Part of the problem with this condition is weight gain. Forty pounds is like a 5 year old. And there's no guarantee that Ivy is a good enough match.

Sasha's best hope is a cadaver donation/transplant. I'm not real up on the transplant process and I haven't asked Ivy that much about the specifics yet. As a result of this needed transplant, the family is going to Houston to Texas Children's Hospital (where they've been going) and Sasha will undergo pretty extensive testing to get her ranked and placed on the UNOS list. (UNOS=United Network for Organ Sharing) The last I heard, the doctors expect the wait for a liver to be about 6 months. Of course that could be much longer or shorter. I hope that it's shorter. Sasha needs a liver in order to live a life.

So my plea is to check out the links below (and do you own search for more information; this is a very small amount of the information out there) relating to biliary atresia and please keep Sasha in your thoughts and prayers. Her Caring Bridge site can be found here.

And also a note on organ donation. Please donate your organs after death and make sure your family knows of your wishes. Even if you have it written down, in many cases, the family can overrule your wishes. It wasn't even a question to us as to whether or not we should donate Drew's organs: of course we would try! Unfortunately, having received a lot of blood transfusions, being on ECMO and multiple organ failure, Drew was not able to be a donor. But we certainly have a UNOS number proving that we tried. I wish so much that his organs could have been used. My family knows that I am to be an organ donor and it's an issue that you should look at. No, it's not pleasant to think about but you really need to. Check out the UNOS website to get additional information and see the gap in needed organs vs. those donated. Thank you.

Cincinnati Children's Hospital

Texas Children's Hospital

Wikipedia

National Digestive Diseases Information Clearinghouse

3 comments:

Ivy said...

Dang, you put a lot of work into that! Thank you for supporting our cause. I've been meaning to tell you how IMPRESSED I am with your CDH website. It is so professional.

Anonymous said...

I don't remember how I came across this website, but I read it occasionally, and my heart goes out to you. I have a 2 year old daughter, and I can't imagine going through what you are going through. Anyway, I live in Houston close to the medical center (and TCH), so if there is anything I can do for Ivy or her family, I'd be happy to. My e-mail is eorzeck@innerwisdom.com. -Erin

Emma Harvey said...

I will DEFINATELY be thinking about little Sasha and praying she gets the treatment she needs to live a happy and LONG life, thank you for all the information.