VALERIERetrun to 22q Stories
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Valerie was born in January 1997. She was delivered by emergency c-section at 36 ½ weeks gestation, weighing just 4 pounds and 7 ounces. As soon as Valerie was born she was whisked away to the NICU. After 3 days of close observation we were released from the hospital and began our parenting journey.
The first seven weeks of Valerie’s life were indescribable. She would spike mystery fever after mystery fever and seemingly gasp for air. We were at the pediatrician numerous times and sent repeatedly to the emergency room at Cincinnati Children’s Hospital Medical Center. Then on March 16, after being released from Children’s the night before, Valerie turned the ugliest color of BLUE I have ever seen. Totally hysterical, I called 911 and my husband resuscitated Valerie; she was breathing on her own when the paramedics arrived.
Valerie was officially diagnosed with DiGeorge Syndrome on St. Patrick’s Day, March 17, 1997. The high fevers she experienced were caused from her low white blood cell count associated with her deficient immune system and a bacterial infection, cellulitis, which she contracted at the hospital emergency department. The “reflux” was not reflux at all; she was gasping for air because her calcium level was critically low – no parathyroid gland. The low calcium affected her tongue which was getting in the way of her breathing.
Diagnosis was bitter-sweet, for me, because the diagnosis meant a life-long fight for my baby girl, but it also brought with it answers to the questions that haunted me for the first 7 weeks of her life.
Valerie has had quite a journey, one that could fill the pages of a very lengthy book. Her prognosis was never good; the doom and gloom presented by physicians was exasperating. Her future was grim. The doctors, some good and some great, all had different messages — we chose to challenge them and win battles that were supposed to be lost. Today, Valerie still struggles with complications of her immune system. She is treated with high dose IVIG at Cincinnati Children’s Hematology/Oncology every other week. She has been on steroids for the better part of her life so she is rather small for her age. We are currently trying to decrease the dosage in hopes for a growth spurt. However, LIFE IS GOOD!
Valerie spent the first 10 years of her life in protective isolation. She was home instructed by teacher’s in our school district until she was able to attend school at the building in 5th grade. Valerie just graduated from the 8th grade. She is an honor student and an amazing pianist. She has a heart of gold and has the most contagious laugh you have ever experienced. She can’t wait to go to high school next year and looks forward to a bright future. Valerie talks about going to college and incorporating music into her career. She has so much to offer and so far to go.
Valerie’s case of DiGeorge Syndrome was spontaneous which gave us the opportunity to have more children. Valerie has two younger brothers who love to torment her at every opportunity.
I wish to bring a message of hope to all parents, especially those with children like Valerie. Never give up on your child, always be your child’s advocate and don’t be afraid to ask questions, lots of questions — stay informed!
Choose to be HAPPY every day!!!