Caitlin

My son has a rare immune deficiency disorder and he can’t be immunised

Caitlin’s Story

Sonny is four and half months old now, a healthy gorgeous baby. You wouldn’t know he has such a rare condition. We knew when he was born that he had a 50% chance of having X-linked agammaglobulinemia, a rare condition in which he cannot make any antibodies therefore cannot fight off any form of sickness/infection. Knowing that my father has lived with this condition his entire life, and that I am a carrier, we knew throughout pregnancy that if we had a son there would be a 50% chance of him inheriting this dreadful disorder.

When he was just three days old we got the terrible news that sure enough, he had the same condition as my father. I was in shock: even with such a high probability I just didn’t think it would happen to us. It is overwhelming being first time parents, and as any parent would know an emotional rollercoaster and having to hear this news just three days into our new journey was heartbreaking. The whole family was there and we all had a cry.

The Royal Children’s Hospital is great. We had an appointment with the specialists the following week, after we had been discharged from hospital, which confirmed his diagnosis. Thankfully, for the first few months of his life the antibodies I had given him throughout pregnancy and my immunisations protected him.

The specialist team discussed with us why Sonny would never be able to be immunised. In my head I just couldn’t stop thinking…how is he going to go to kinder, how will he ever be protected?

It is a lifelong treatment plan. He will have plasma infusions once per week, which provides him with some protection to certain illness’s however not all. As a mother all you want to do is protect your babies and keep them as healthy as possible. Unfortunately, a lot of that has been taken out of my control, so all I can do is try to surround him with healthy people.

I wanted to be part of this campaign to let parents know that immunisation is a gift and to just do it if you can, if not for yourself and your child, then for kids like Sonny who rely on blood donor’s immunity to live a normal, active life.