Three days after we brought her home I noticed a hive like rash manifesting all over her body. It looked very similar to an allergic reaction and so began my journey for answers. Each week we had Shannon at the doctors office as her rash began to change and worsen. We went on trials of formula, steroids, elimination diets for me, back to breast milk and then back to formula.
Shannon also wasn't sleeping well or behaving like a "normal newborn". I just had that feeling that something wasn't right. Then on Oct 6th at 3am Shannon stopped eating. Her skin looked blotchy, raised, discolored, cracking, peeling, and resembling something out of the movie Alien on her face and head. We gave her the day to see what she would do and she did eat, but only a few ounces. To me that wasn't enough so at 5 Pm I called the doctor. The nurse said to either give it a few more hours or come see the doctor, I chose the later.
Our pediatrician, being an ER doctor here at Children's Primary, new exactly what to look for. Two weeks prior we found lymph nodes up behind both ears, but during this appointment our doctor found them up all over her body. Some as large as gum balls. That night I took Shannon to Children's Primary ER after our pediatrician talked to his fellow doctor's by phone so they would be expecting us.
After a thorough exam and blood work Shannon was admitted to the Infant Surgical Unit for observation while the blood work was being analyzed. Honestly, I continued to see this as an intense allergic reaction and was adamant that a Pediatric Allergist observe Shannon. The Pediatric team agreed because her rash was eczema in it's presentation and lymph nodes are often raised in children fighting an ongoing battle with food allergies.
After 3 days in the hospital the blood work came back and that night everything changed. The doctors came into our room at 11:30 at night and they never do this. They came in dressed in gowns with gloves and masks on, another indicator that something wasn't right. They sat down next to me as I rocked Shannon and said, "I'm sorry but we have bad news. Shannon has no immune system. We need to move her to a 0 pressure reverse isolation room tonight to protect her from infection." At that point I knew we weren't going home soon, but I never expected the diagnosis I received the following morning in a conference room with two the top doctors in allergy and immunology her at Children's Primary.
On October 9th Shannon was diagnosed with SCID, severe combined immunodeficiency, basically meaning she has no immune system of her own. Her T cells are mature, the should be naive or new because she is an infant, and attacking her own body causing painful rashes from head to toe. She has no B cells at all. This combination causes
major inflammation of the gut resulting in gas, abdominal cramping, reflux, and constipation/diarrhea. Because Shannon has no functioning immune system to protect her she we were moved that morning to ICS an Immune Compromised Unit that protects children with cancer and immune system diseases.
On Oct 11 we met with HemOnc, Hematology and Oncology, doctors to here about the prognosis and treatment. The prognosis was good, 90% chance of full recovery with some blood transfusions and injections needed in the immediate future post op. The hurdle...finding a donor. We were told Shannon would need immune suppressing drugs, tons of blood work, chemotherapy and bone marrow transplant.
The best chance at finding a match...a full blood sibling. Praise God, we thought because we have one. Our son Liam Boaz was our best bet for immediate or relatively immediate treatment. The next day Liam had labs draw and the day following they took Shannon's. This blood DNA typing takes 2 weeks. If he is a match Shannon will start treatment right away as long as Medicaid insurance accepts us. We lost our insurance in June.
For now Shannon is on a special formula in which all the proteins are broken down. I was ordered to stop nursing Shannon as soon as my blood work showed up CMV positive, a virus adults carry in them, 2 out 4 adults to be exact, except that this virus comes from a common cold and is harmless to healthy babies. She takes regular doses of Vistiril, a drug that acts like Benedryl, to reduce her itchiness and discomfort, allowing her to sleep, and an antiviral that we have been told she will take for at least a year.
This is where Shannon is at. A standstill. Waiting, hoping and praying for a cure to come quickly. Only a cure will stop the pain, inflammation, and rashes. Our family is adjusting to a new normal, mom at the hospital, dad running the home, and family dinner once a week. How I would give anything to be home with all our children, dishes in the sink, laughing and dancing in the living room with messes on the floor. Who cares about a mess? I don't. Shannon doesn't. All stresses prior seem trivial. Especially now as I watch Shannon rock away in her swing and listen to her new love, country music, in the room she will call home until we have a cure. A cure we hope is wrapped up in a beautiful, strong, handsome packaged named Liam Boaz whose name means, "Strength and Shield". How poignant. The child giving will be the shield of the child whose name means "God is gracious and Hope".
Her life verse: Romans 8:24-25
"For in hope we were saved. But hope that is seen is not hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait patiently."
