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Posted on 20. September 2012

The Journey of Risks

By Rachel French

The last time I did something for the first time was the day I became a mother and learned that sometimes life throws curves at you and things don’t always go according to plan. Within hours of being born, my son Mark was life-flighted to a children’s hospital, and our journal of “risk-taking” began. We spent the next days, weeks and months in and out of hospitals, clinics and laboratories as a wonderful team of specialists tried to puzzle out the “zebra” in their midst.

The greatest risk we ever took was when Mark was 3 months old and diagnosed with probable severe combined immunodeficiency (SCID). He had an extremely complex clinical picture that also included severe anemia. Highly respected immunologists recommended a bone marrow transplant. The outlook was grim: My son had a two-year life expectancy without the procedure and many possible complications with the procedure.

Our local specialists at the children’s hospital closer to our home urged caution and more testing. (I must admit that my first instinct was to keep Mark in isolation at home for the rest of his life and never venture into the germ-laden world again.) My husband and I decided to take a gamble on a young resident’s hunch that it was not SCID, and we risked waiting for additional testing to be done before rushing into a transplant. Thankfully, the tests revealed an improvement in his immune function to the extent transplant was not medically necessary, and Mark’s illness could be managed with intravenous immune globulin (IVIG) and close monitoring by his team of doctors. A firmer diagnosis of common variable immune deficiency was made when Mark was 2 years old, and his anemia stabilized on IVIG therapy.

In the past 10 years, we have had to make many choices that carried inherent risk: Do we put a port in? Do we try home nursing? Do we try antibiotic prophylaxis? Should we follow our immunologist when he moves? Should we try subcutaneous infusions? What about home school or public school? Do we give Mark another day for symptoms to improve or rush him to the pediatrician? We, as do other patients of primary immune deficiency disease (PIDD) children, face these difficult decisions, as well as take risks that other parents take for granted as a rite of childhood - risks such as playing in the McDonald’s Playland, attending a birthday party in February, going swimming in the lake or petting a turtle discovered in the backyard. Unfortunately, there is so little knowledge and awareness of PIDDs that we not only have to take these risks, but we have to try to explain to loved ones and friends that we are not just overprotective; these activities pose a real danger to our children.

Risk is the name of the game when the person you love most has a PIDD. We risk trying and trying again when antibiotics fail (and keep that positive front!). We risk allowing our children “normalcy” with chances to explore and grow. And, most of all, we risk trusting in a future as bright and shiny as it can be - despite the obstacles we have to overcome to get there. These risks are what cause parenting a child with a PIDD to be a journey. We’ve learned not to take anything for granted and instead enjoy the treasure we’ve been given: the joy of loving, protecting, advocating, teaching, rejoicing and, finally, letting our child soar to dreams loftier than any we could have imagined for him.


Comments (1) -

5:31 PM on Monday, October 01, 2012

This essay made me cry.  I am a 32 year old CVID patient, and was born with the disease as well.  I was not diagnosed until I was 7 years old, however.  I am so glad that your son is stabilized on therapy and what a blessing that the resident was there to help!  I was also diagnosed by a brand-new doctor, on a hunch.  

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