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Jayli Grace

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All About Me
Jayli was born December 28th, 2000. Although she was 3 days past her due date, Jayli Grace was the best Christmas present we've ever received. I must admit that it's been a tough year with many ups and downs, but we wouldn't trade our precious gift for anything in the world.

Born with a rare liver disease, Jayli was jaundiced almost from birth. It took the doctors 11 weeks to find out that Jayli had biliary atresia. This disease affects approximately 1 in every 15,000-20,000 babies. The cause is still unknown. Biliary atresia destroys the bile ducts and usually the gall bladder as well. This leads to poor bile flow and eventually liver failure. When Jayli was diagnosed, she underwent a long operation called a kasai at DeVoss Children's hospital in Grand Rapids, MI. During this operation, a piece of Jayli's small intestine was attached to the liver in place of her main bile duct, and what was left of her gall bladder was removed. The chances of this operation being a success is only 33%.

Unfortunately the operation was unsuccessful for Jayli. In May, Jayli was listed for a liver transplant at Childrens Memorial in Chicago. Biliary Atresia is the number one cause of liver transplants being needed in children.

Testing then began for a living donor. My husband, Tony was immediately ruled out because his blood type was incompatible with Jayli's. I however passed all of the tests and surgery was scheduled for July 11th. It's so strange, but I had a gut feeling that Jayli's transplant wasn't going to happen on that day. I was right. When the doctors opened me up and found spots on my liver, the surgery was called off.

My dad then stepped up and insisted on being tested. After weeks of testing, my dad was finally approved as a match and surgery was scheduled for August 22nd.

Everything went as planned and the surgeries went without any complications.

Jayli was in the hospital only 9 days after her transplant. During that time she experienced rejection but it was treated successfully with high doses of steroids. The only other complication Jayli had was getting CMV. We were in Chicago for a total of 5 weeks and stayed at the transplant house because we live more than a couple hours from the hospital. What a great day it was when were finally able to take Jayli home.

Jayli's transplant gave her many months to grow and develop. She came a long way since being the sick, tiny, yellow baby that she was before receiving her gift of life.

In February 2002, Jayli needed to have some tests done because her liver numbers were elevated and she was having blood in her stools. After a bunch of tests, we found out that Jayli's bile ducts were blocked and her portal vein was clotted. The portal vein is the main vein that carries blood from the liver. Jayli had a couple drains put in to open up her bile ducts. She was in the hospital for two weeks. The first couple days were spent trying to get the drains positioned correctly. The rest of her stay was spent battling the rsv and c-diff that she got while in the hospital.

On April 3rd, Jayli had a bypass surgery for the clot in her portal vein. Unfortunately the portal vein was clotted too far up in the liver and the rex-shunt was unsuccessful.

Jayli was then listed for a second transplant. She could not have a living donor transplant this time because she needed a new portal vein and that can't be taken from a living donor. Jayli was approved by UNOS to be a status 1 and we waited for a new liver to become available.

On May 1st at 2:45am, we got the call that a liver was available for Jayli. She went into surgery that afternoon and underwent a very long complicated surgery. We finally got to see her about 2:30am on the 2nd of May. What a long 24 hours!

Jayli had a very rough post-op period from her second transplant. She had many complications including, a major bleed that created a hematoma, multiple bacterial infections, multiple episodes of rejection, a bile leak, and bile duct strictures. During this time we bounced back and forth between the transplant house and the hospital. Jayli was finally released to go home on August 30th 2002.

A few days after being home, Jayli had a routine blood draw and we found out that her platelets were dangerously low. Her level was at 2,000. Normal platelet levels are 150,000 to 450,000. Anything below 20,000 and there is great risk of having a fatal spontaneous bleed. Jayli was admitted to DeVoss Childrens hospital for a couple days. After a few days of not knowing what was wrong with Jayli and unsuccessful platelet infusions, we decided to have her transferred to Childrens Memorial in Chicago.

Once we were there, we found out that Jayli had Immune Thrombocytopenic Purpura (I.T.P.). This is an autoimmune response to an illness. Antibodies that were fighting the illness somehow get attached to the platelets. Then the spleen recognizes these as something that needs to be destroyed and it gobbles them up. We tried multiple things to help Jayli. She had infusions of something called IVIG and even had a chemotherapy treatment. Nothing helped so Jayli underwent a splenectomy on the 15th of September. It worked and brought Jayli's platelets up to 387,000! Jayli was released to go home on the 19th of September.

We remained at home for a couple of months. Mid December though, Jayli was back in Chicago. This time it was for PTLD. This stands for post transplant lymphoproliferative disease. Left untreated, it can turn into lymphoma. The treatment for this disease was to take Jayli off all of her immunosupressants. This in turn put her into chronic rejection again.

In January, Jayli was diagnosed with Celiac disease. This means she is allergic to gluten and must be on a gluten free diet for the rest of her life.

The past couple of months, Jayli has been suffering really bad from chronic rejection, bile duct strictures again, and has also gotten a couple of nasty bacterial infections. Her most recent hospital stay was for low potassium and magnesium.

Jayli was relisted for a third liver transplant. Unfortunately, Jesus called her home on April 24th, 2003. Angel Jayli will be missed by many.