The Big Diagnosis

Being diagnosed or having a child diagnosed with a liver disease, as with other diseases, is a traumatic experience. There were many things I learned, as did the main character of my book on Biliary Atresia (Angel Donor) at the onset of my child's liver disease. After battling the emotions that go along with something so scary, I found some things to be helpful. Here are some tips I came up with during our ongoing battle with, liver disease and transplantation:

• Stay Calm - take a deep breath and remember to care for yourself and your child. Remember, you can't help your child if you aren't yourself. He/she needs you.
• Find Support-While it is important to remain clam, finding support for yourself is equally important.Joining a group with others going through similar issues will help empower you and help you learn more. Remember, however, never substitute this information for your doctor's information. The doctor knows your child and his her condition. 
• Don't Forget Date Night-Many times marriages suffer when a close family member is ill. Be sure to keep those dates with your spouse. Single Parent? It is still important to get out. Make plans with friends or siblings and have a good time. Taking time for yourself makes you a better parent to your child.
• Trust Your Doctor- Be sure you follow your doctor's advice. They have seen many things, medically, and they are working with you to help your child. That said, don't be afraid to ask questions if you don't understand something, or speak up when you feel something is wrong. Your input it crucial!
• Write About It- Use a journal or an online journal to record your experiences during this time. Record the ups and downs and how you got through them. Online journals,like Caringbridge also allows you to share updates with families and friends, which is useful for those late night E.R. visits and everyone wants to know what's going on.

Below is an inspirational image I created. Please share it as Olivia and I hope to help as many families as we can.

All About Biliary Atresia

In my newest children's book made especially for other children living with liver disease and transplantation, the main character, Olivia, has a liver disease called Biliary Atresia, which caused her to need a liver transplant. In today's post I will discuss just what this disease is, how it is treated and what to look for. 

What is Biliary Atresia?

Biliary Atresia is a very rare liver disease where the bile ducts from the liver are blocked. It is estimated that one in every 10,000- 20,000 live births are born with the disease. In addition to the large bile ducts being blocked, the disease begins to spread to smaller bile ducts. This means bile can't drain from the liver properly. If left untreated, the liver becomes scarred and loses it's function. Treatment is needed as soon as possible. After testing to be sure the disease is in fact Biliary Atresia, a surgery called the Kasai procedure is done in order to regain bile flow. This allows bile to flow, however it can't reverse the scarring of the liver. Often times a liver transplant is needed down the line. 

What are the symptoms of Biliary Atresia?

• Yellowing of the baby's skin
• Yellow eye whites
• Dark Urine
• Pale, white or clay colored stools.

If a child is diagnosed with the disease, there are many places to get support. 

• My first suggestion is to READ, READ, READ. This is the reason I wrote Angel Donor. It is for our brave kids battling this disease. Parents and caregivers, be sure to read about the disease. There are many articles out there. Ask your child's doctors for their favorite resources and books about the disease. 
• Get support online or in person. Ask the hospitals if there are support groups, other parents who are going through this, etc. My two favorite places for online support (which I've also listed in the back of Angel Donor) are: http://www.classkids.org  and http://www.liverfamilies.net. The parents and administrators there are full of information and support. It's great to talk with people who know exactly what you are going through.
• If you feel the need, you can set up a secure, special web page to share updates with the family. The last thing you will be thinking of during a hospital stay is calling all the family members and repeating the update on your little one a hundred times. Once you get a private moment to yourself, you can update the page and everyone will be in the loop. One great website is http://www.caringbridge.org . It is secure, so only people you give the direct link to can access the page.  

If you have found this post in your search for answers about this disease, I hope that I have helped you some. Feel free to comment here anytime. I would love to help in anyway I can.