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Our journey with Marisa has been full of hills and valleys, but through it all we've been so blessed to be the parents of such a sweet little girl. She was born on February 17, 2003. She is dearly loved by her big sister Camille and big brother Jackson. Marisa's birth was aired live on the Discovery Health Channel. Shortly after birth she began to look a little jaundiced. Not bright yellow, but not pink. When she was 5 weeks old, we discovered that she had inguinal hernias. I was devastated that my little baby had to have surgery. She sailed through it with no problems at all. During the next 2 weeks her color got much worse. She turned almost orange and the whites of her eyes were dark yellow. At her 8 week check up with the pediatrician he was able to feel that both her liver and spleen were enlarged. He immediately sent us to the lab for blood work. The call came the next morning that we had to get to the hematology department at Children's Hospital of Michigan. She needed to be seen immediately. The next week was filled with a lot of tests, a lot of waiting, and countless prayers. She was admitted the following week and a liver biopsy was scheduled. After the longest 3 hours of my life, the surgeon called and said that she had a rare liver disease called Biliary Atresia. She did not have a biliary tree or bile ducts on the outside of her liver. He would be performing a Kasai procedure which involved attaching a section of her intestine to her liver with the hope that her liver would be able to drain and function properly. We knew at this point that she had about a 75% chance of needing a liver transplant eventually. Marisa recovered rather quickly from surgery. She was close to being discharged when she started showing signs of infection. The next thing we knew, she was back on the respirator. She kept getting sicker and was in renal failure. The site of infection was unknown and they had to perform emergency surgery to open her abdomen back up and make sure the liver was not the source. They didn't find anything inside and she continued to get even sicker. She was eventually put on the oscillator because the traditional respirator wasn't strong enough. Within a few days we were told that she was in septic shock. Finally, the infection was identified and the proper antibiotics were given. She spent a total of 28 days in the NICU. During that time we witnessed many miracles and answered prayers with Marisa. Throughout the next few months she seemed to be doing quite well. In July, our GI referred us to the University of Michigan Pediatric Liver Transplant Team for evaluation. At that time they did not feel that she was ready for transplant. Her liver function was good. The focus was going to be on nutrition and getting her weight up. In August she got a cholangitis infection and was hospitalized for 5 days. Her liver function returned to normal and she started growing better. In October/November she was hospitalized 3 times in 3 weeks. On November 12 she vomited blood and was taken by ambulance to the local hospital and then transferred to U of M once she was stable enough. A scope was done which showed that she had esophageal varices. At this point, we were told she would be listed for transplant. We thank God for the peace and relief that he gave us with this decision. We spent one year waiting for the call to come. During that year, Marisa endured numerous hospital stays, cholangitis infections, and after a mass was found on one of her adrenal glands she was even evaluated for a cancer called neuroblastoma. Thankfully the results were negative.
On November 5, 2004, we received a call informing us that Marisa had a liver awaiting her. A family who had lost their child had made the heroic decision to donate what our child so desperately needed. Their difficult decision has enabled our daughter to celebrate her sixth birthday and have a chance at a normal life. We will forever be grateful for this tremendous blessing bestowed upon our family.
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We would like to acknowledge the tremendous support we've gotten from Mott Children's Hospital at U of M in Ann Arbor, MI. The doctors, nurses, and support staff have been simply wonderful. Special thanks goes to family and friends who have been so supportive throughout the past five years. Above all, we praise God for his tenderness and mercy.
We'd like to introduce you to some of our "Liver Friends" Caden Kaitlyn Natalie Anna Trenton Jessica Carson Carly Emma Hannah Landon Ashlee Sami & Kyle Anthony Grace & Meghan Annika Aiden Angel Haley Jack Hope Angel Antonio
Come and meet more of our liver friends at Liver Families http://www.liverfamilies.net
An international online support group for families whose lives have been touched by pediatric liver disease and transplant.
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Journal
Thursday, June 3, 2010 8:09 PM CDT It has been so long since I have updated. I'm sorry! I know there are still a few people who check in here regularly and I thank you for caring enough about Marisa to check up on her.
Marisa is doing great. She is just days away from finishing first grade! It is hard to believe. 7 years ago, the thought of her making it to this point seemed almost impossible. Although we had the faith that God would bring her through the storm, the odds were stacked against her.
Marisa's school did a fundraiser for the American Liver Foundation. They had mix and match day and silly sock day. The students paid $1.00 to dress up on those days. They raised $195.00 for the ALF. We are proud to be sending the check in honor of all of those suffering with liver disease!
Thanks for checking in. I'll update the pictures on here soon. I have neglected this site for far too long...
Love, Shannon
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