It is my pleasure to introduce to you to Smarty mom, Elizabeth Newton. Elizabeth is married to Rick and is mom to Winslow (4), Crawford (1 ½) and twins Reynolds and Sara Larkin (4 months). Crawford has been battling a very rare disease, Biliary Artesia and has recently undergone a liver transplant. Elizabeth has been an inspiration to me. She continued to stay strong and very upbeat during this tumultuous time. I still don’t know how she did it!
When did you first learn that Crawford had Biliary Atresia disease?
When Crawford was eight weeks old, we took him to the pediatrician for being jaundice. The jaundice occurred many weeks after he was born. We spent a week at Presbyterian while doing multiple testing followed by a liver biopsy.
Can you explain to us what Bilary Atresia is?
Biliary atresia is a rare live disease with only about 300 children diagnosed yearly in the US. There is blockage of the bile ducts. Therefore the liver is not able to flush out the bile causing jaundice and sirrosis of liver. Experts are thinking that it is a combination of a virus and a gene, the combination of the two together. In Crawford’s case the virus attacked his gallbladder and basically the gall bladder dissolved. When he was nine weeks old, he had a surgery called the kasai procedure. They took part of his large intestine and made a loop to help drain the bile. This procedure didn’t work but it gave him some extra time before he had to have a transplant. We knew that he had to have his transplant by age three in order to live.
How long was Crawford on the transplant list?
Crawford was officially on the transplant list spring of 2007 at Johns Hopkins. They wanted a perfect liver since everything else with Crawford was healthy and they wanted it to be a one time deal. In September of 2007 he was moved to the top of the list at Johns Hopkins. We got out first call Easter weekend 2008 that they had found a match. We flew up there on med center and after they got the liver from a local donor they realized that the liver from the 23 year old had too much fat on it. They were going to have to cut the liver down in order for it to fit and they were worried that if they cut it down it would have bled internally.
We came back to Charlotte and then got the next call over Memorial Day weekend while at the beach. We flew up to Johns Hopkins again and the surgery took place on May 25th 2008. Crawford was on the transplant list for a little over a year. His donor was a six year old from Colorado. There are approximately 15,000 people waiting for a liver transplant yearly in the US and it takes about 12 to 36 months to find a donor.
What was the day of the transplant like?
There were many emotions the day of Crawford’s transplant. I was so thrilled that the time had actually come and was so happy that he was going to feel better. I felt so sad for the family that had lost their six year old child in a farm accident. I was anxious during the surgery since anything could have happened. My mind was spinning since we had picked up and left in such a hurry leaving our 3 month old twins and 4 year old behind. I think I experienced almost every emotion possible but most of all very grateful and optimistic for our sweet son.
How is Crawford doing now?
Crawford is doing great now. You would never know that he had been through such major surgery. He has fully recovered and we are six weeks out. He is full of life and definitely has a lot of spunk. He is considered healthy and will live a normal fulfilling life.
What would you want other moms to know?
I would tell parents to be an advocate for your child just like you are for yourself. If you feel like something is not right with your child and their health then seek appropriate care. Educate yourself as well as your family on the proper care and needs of your child.
On a lighter note,
What is your favorite kid’s boutique?
My favorite children’s boutique in Charlotte is fancy pants. I think they have a great variety of clothes for both my boys and girls.
Where is your favorite place to eat dinner out with the family?
My favorite place to eat with the children is Providence Road Sundries. We can walk from our house and its very child friendly. It’s very easy with having four children.
What is your favorite weekend activity?
Our favorite weekend activity is to head to the beach to get away or we love to go to any children’s festival that might be going on.
What is your favorite date night spot?
My favorite date spot is Primo’s. I feel that the food is always good, it’s a cozy atmosphere, the service is great and it’s a quick drive home.
I could not live without my…….
One thing I couldn’t live without is my husband and family. They have all kept me sane and have supported us during Crawford’s sickness and the birth of our twins.
Thank you Kaylee for introducing us to Elizabeth and thank to Elizabeth for being our Smarty Mom and sharing your story.