Understanding SCID: One family's journey

How did you feel when doctors diagnosed your child with SCID?

As Ava's parents, we were in disbelief, shock, and very numb, unaware of how our future would turn out to be. We could not come to the realization of what was happening to our newborn baby. It wasn't until after her first bone marrow transplant, also known as HSCT, that we realized what we were coming up against with battling this condition she was in. The side effects, the treatment, the medications, and seeing her in the extreme state of being ill is when we came to the realization of how this was affecting Ava.

What did you tell family and friends?

We kept our family and friends updated throughout her journey with SCID. We updated them with her milestones in the healing process. Also, in the stages of Ava gaining her immunity back and throughout the following years, not all of whom we shared her updates with understood what our daughter went through. We had to accept the fact that not all family and friends were truly there for us.

What gave you the strength to remain calm and carry on in the beginning?

What gave us the strength to remain calm and carry on, in the beginning, was all of the support from our families on both sides. We appreciated all the support and help from our amazing social worker, who helped us in so many ways and went above and beyond for our family. Also, our Navajo traditional healing ceremonies who prayed for Ava and our family. We had support coming in from foundations, support groups, and other parents and families who were going through the same thing. That’s what helped us remain calm and gain strength through all of this.

What words of advice would you give parents whose babies are newly diagnosed?

Words of advice we would give to other parents is to stick together through the bad and the good and to remain a team. Keep yourself busy during isolation and get fresh air when you have a chance. Take that walk outside, even if it’s just for 5 minutes. No matter how hard it is seeing your child endure all the pokes and medications, try and keep them smiling throughout their healing process. Isolation can be overwhelming mentally, emotionally and physically, so it’s always good to find a hobby to keep your mind off the negative things.