“Olivia never asked to have a disease like Biliary Atresia. It made her liver sick and only a transplant will make her better. After waiting several months and close to losing hope, she gets the call she’s been waiting for. The journey of her live is about to begin.”
Interview With Jennifer Gladen:
Hi Jill. Thanks for taking the time to discuss Angel Donor with your readers.
What inspired you to write Angel Donor?
My daughter, Jackie, was born with a liver disease called Biliary Atresia and later needed a liver transplant. She was in and out of hospitals since she was three weeks old. I remember wishing there was something I could read to her to help her get through these times. That’s when the idea for Angel Donor was born. It wasn’t until years later that I was able to bring myself to write it.
What age group is it appropriate for?
Angel Donor fits well with Pre-K and the primary grades.
What were some of the challenges with writing on this topic?
It was very hard to write the truth about Biliary Atresia, liver disease and transplants but at the same time not be too scary for children. Especially since this book is meant to be comforting and something children can identify with.
What is Biliary Atresia?
Biliary Atresia is a childhood liver disease. Children are born with a liver that has blocked bile ducts, which in turn scars the liver and causes infection and more liver damage. Because of liver damage and the bile ducts not draining properly, jaundice (a yellowing of the skin) occurs. Without treatment, the liver can fail.
How is it diagnosed and what kind of treatment would a child with this issue need?
Usually Biliary Atresia is diagnosed when a baby is just a few weeks old. They are jaundiced and don’t eat well. If Biliary Atresia is suspected, the doctor will order blood tests, X-rays, and a liver biopsy.
There is no cure for Biliary Atresia. The initial treatment is to perform a surgery to restore the bile flow to the bile ducts outside the liver. Some patients do well with this treatment but most children with this diagnosis need a liver transplant because gradual liver damage continues to develop.
How can this affect a child and his or her family emotionally?
I think different children handle this situation in different ways. They feel a range of emotions. There are a bunch of hospital visits, emergencies and a host of experiences, which can make a child anxious. For example, my daughter Jackie didn’t like the highway for the longest time because when we went on the highway it usually meant we were going to the hospital. However, in our experience my daughter seemed to understand the “bad stuff”, i.e: needles, IVs, etc were to help get her better. My advice is during hospital stays, take advantage of your Child Life Specialists (http://www.childlife.org ) They help the child handle what is going on psychologically when a child is in the hospital.
In my book Angel Donor, Olivia is painting a picture in the playroom. Usually a large playroom like that is run by Child Life specialists. My daughter knows many Child Life Specialists. They helped her understand the medical procedures. Jackie used pretend play where she put an IV into her doll. Her favorite, however, was painting and art. All these activities make the hard times easier to deal with.
The emotional effects on the rest of the family are just as tough. Parents and siblings are worried about the child. Routines are disrupted. Parents of more than one child are torn between their responsibilities of being with the child in the hospital and being with the rest of their children.
What advice would you give to parents whose children need organ transplant?
I have a bunch of advice I’ve collected over the last ten years. The first is to ask, ask, ask. Ask questions when you don’t understand what is going on with your child. Also if you research online about the disease, be sure to talk to your child’s doctor. Not everything we see online is 100% fact. And your doctor knows your child.
Get support. This is what kept me sane 🙂 . There are groups and websites designed to offer support, information and advice. Again, the information is not mean to replace your doctor’s advice. Always go to them when there is a problem or a question about your child’s medical care. Having said that, these groups are filled with other parents who have “been there”.
Two of my favorite support websites (also listed in the back of Angel Donor) are: Children’s Liver Association for Support Services (CLASS KIDS) – http://www.classkids.org and Liver Families – www.liverfamilies.net
What tips could you give a therapist on how to support a child and his or her family with this issue?
I think a therapist could do many of the things a Child Life Specialist might so, such as the medical play techniques or draw about their feelings. Jackie loved to pretend to put an IV in my arm. She continued doing that long after she came home from her hospital stays.
Where is Angel Donor available for purchase?
You can get Angel Donor by visiting:
Barnes and Noble
You can also order autographed copies at my website.
What is your blog/website address?
What other books have you written?
A Star in the Night was my first book. It is about David, who makes his way home on Christmas Eve and sees this is no ordinary night. Accompanied by a shimmering star and some tough decisions, David encounters three experiences that will change his view of Christmas forever.
Teresa’s Shadow – Teresa’s Shadow isn’t just a story about bedtime and monsters. It’s about fear, friendship and kindness. One night at bedtime Teresa discovers Corky, a furry visitor, in her room. Corky is no ordinary monster. In fact he seems just as scared as Teresa. Teresa soon realizes she must help Corky get home.
When you are not writing, what else do you do?
I work full time as a teacher at a child care center in addition to taking care of my three children.
What writing projects are you working on right now?
I have 2 other books I’m finishing up. Stay tuned…