With the cost of a transplant often exceeding $500,000, many transplant patients are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. In Hampton Roads, volunteers are raising funds for transplant patients like local child Maggie Smith.
Hi! My name is Margaret Joi Smith, but everyone calls me Maggie. I was born August 3, 2007 at Norfolk General Hospital. I was a miracle from the start because Mommy was told it would be very difficult to get pregnant. Since Mommy has Type 2 Diabetes, the doctors watched over me very closely during her pregnancy. I was in Mommy’s tummy for 20 weeks when the doctors saw something odd in one of my ultrasounds. I was missing my radius bone in my left arm. The doctors told Mommy about Dr. Paley in Baltimore, MD who could fix my arm when I got a little older. Mommy and Daddy were so happy!
Mommy took very good care of herself while I was in her tummy. The doctors decided to do a c-section on August 3, 2007. The doctors pulled me out at 1:49 p.m. I weighed 8 pounds 5 ounces and was 19.75 inches long. They wheeled me to a special nursery because they were worried since Mommy had the diabetes but nurses said my insulin was fine. Everything seemed to be going fine. Mommy fed me, changed me and rocked me – life was good!
On August 6, 2007, Mommy and I were going to go home with Daddy but an hour before we were supposed to go home the doctors came in and told Mommy something was wrong. They’d been doing some blood tests on me and found that my Direct Billirubin was too high. It was making me turn yellow. This wasn’t the kind of yellow that could go away with lights. The doctors knew it was something more serious, but didn’t know what. The doctors made me stay in the nursery. I finally got to go home on August 8, 2007 but Mommy and Daddy had special instructions on how to take care of me. I had lots of medicines I had to take. Over the next few weeks the doctors did all sorts of tests to figure out what was wrong with my bilirubin, but everything came back normal.
On September 11, 2007 the doctors did a needle biopsy on my liver. The next day they told Mommy and Daddy they thought I had something called Biliary Artesia. It means I have no bile ducts in my body going from my liver to the intestines so all my bile stays in my body. It makes me feel yucky, itchy, and uncomfortable. It’s slowly making my liver sicker and sicker.
The doctors told Mommy and Daddy they thought I should go to Johns Hopkins where they had more experience with this. We all went to Johns Hopkins on September 17, 2007. The doctors there wanted to do a surgery on me called a Kasai. Sometimes this works and sometimes it doesn’t. I went home on September 28, 2007 and it seemed like that surgery worked. I wasn’t as yellow and I seemed to be feeling better.
I got sick with a temperature on October 22, 2007 and was admitted into CHKD for a liver infection called cholengitis. I have had to go to CHKD for this half a dozen times since I was born for cholengitis and once for RSV. I have missed Halloween, Thanksgiving and 4th of July! In December, during one of my stays they added me to the liver transplant list and it was in the hospital that I learned to wave hi and bye and blow kisses.
In July during one of my visits at Hopkins the doctors told Mommy and Daddy that since I was almost one year old I was ready to get my new liver. At any time, my Mommy and Daddy could get a call to drive me to Johns Hopkins for a new liver.
Since I haven’t been gaining weight (I am 15 pounds today) the doctors are going to ask the transplant list if they will move me closer to the top since I am what’s called a “failure to thrive”. The doctors cannot believe how happy I am despite how sick I am. They say I am the happiest baby, sick or well, they have ever seen!
Hi - this is Maggie's mom now. Thanks for reading about my baby girl! We are hopeful that the transplant will come in time but in the meantime we continue to struggle with cost of health insurance, copays and medications. Another immense cost is our monthly travels to Johns Hopkins. With the chance of getting a liver at any time Maggie’s Daddy and myself are unable to work. We both need to be there during the time of our little angel’s transplant. COTA has set a goal with us to raise $65,000.00 to be used for transplant related costs. Our whole family is working together to reach this goal but we need your help!
Please click on the activities link to see how you can help us in your area. We are grateful that you have taken the time to learn about this precious little girl and hope to see you at our events.
WE NEED VOLUNTEERS FOR EVENTS AND IF YOU ARE INTERESTED, PLEASE CONTACT BRITTANY TOMLINSON WHO IS LOCATED UNDER THE ACTIVITIES TAB. THANK YOU SO MUCH FOR YOUR HELP!!