Sickle Cell

Expecting: During a prenatal visit, Monique and her husband, Derek, were notified that they are carriers for sickle cell trait (SCT) and their unborn child had a 25% chance of contracting the life-altering, and sometimes debilitating, disease –– a disease that would give their child with a life expectancy of 40 years. The couple began searching for a cure while remaining hopeful that their son would beat the odds.

Delivery & diagnosis: Monique’s pregnancy was filled with prayer and anxiety as they awaited the arrival of their baby boy, Cameron. Cameron was born happy and healthy. The couple was  later notified that his newborn screening test results were in. Positive. Cameron had an advanced case of sickle cell.

The first of many pain crises: Doctors informed Monique and Derek that symptoms from sickle cell would take several months to appear and to enjoy the precious “honeymoon” period before any sign of the disease entered their lives. Then, at almost 9 months old, Cameron experienced his first pain crisis — laying motionless and in uncontrollable pain. The family rushed to the ER where they found that the hospital was not equipped to support a pediatric patient, let alone a pediatric patient in the middle of a sickle cell pain crisis. Poorly trained nurses; lack of pediatric supplies; a disconnected staff that dismissed Monique’s concerns. Monique and Derek watched helplessly as their son screamed in pain for hours.

No treatment. One cure: The family moved to a hospital more familiar and equipped to support sickle cell patients. They also began exploring their options in search of a cure. That’s when they’re told that there is only one viable option for Cameron: a sibling with an exact match who could provide Cameron with a bone marrow transplant — a risky procedure for both children. The companies the couple worked for at the time did not support IVF. After switching jobs, Monique was able to land a position with a company that covered the treatments needed for Cameron’s care.

Bryson: Pushed to find a donor before Cameron turned two, the couple turned to IVF treatment and found a perfect match the first time around. Monique talks about what it was like carrying another child, her miracle baby. Two years after Cameron was born, they welcomed their second baby, Bryson.

Life begins: Just before Cameron’s fourth birthday, the family learned that the bone marrow transplant was a success. Cameron is now cured. For the first time in his life, Cam is free —free to play in the sand and run out in the sun, free from the hospital, free from chemo — free to live a life without sickle cell.

Lessons learned: Monique reflects on the lessons she learned through this experience — how it shifted her perspective on life, motherhood and family. Having a child with a disability or illness can take a big toll on a relationship. Monique discusses how the experience transformed the couple’s relationship, bringing them closer in the process, which isn’t true for all couples who experience such hardship.