IDFA Member_Lisa with baby

Lisa’s journey to motherhood

Trigger Warning: suicide.

(If this story raises any concerns, please contact Lifeline Ph: 13 11 14)

 

For as long as I can remember I’ve wanted to be a mum. As a child, when people asked me what I wanted to be, the answer was “a mum”. I wanted a huge family (11 kids and a bus to be honest), but I was in for a rude awakening.

When I was 12, I did some research on my genetic condition Chronic Granulomatous Disorder (CGD). According to the literature of the day and my doctors I realised it wasn’t possible which left me devastated. I genuinely believe this was the root of my subsequent depression and suicidality which lasted more than 15 years. I cannot describe the pain I carried with me.

In 2016 we moved to Tasmania and while attending a conference hosted by the Immune Deficiencies Foundation of Australia (IDFA), we met an internationally renowned specialist in CGD from France. I asked if he there was any research or new treatments on the horizon that one day might mean we could be parents. He was seemingly shocked at my question and told us that in France we would already be parents. He warned that it would not be easy, that there were many risks and no guarantees… but there was hope.

This meeting changed my life. I had to get fit and healthy; quit smoking, defeat my addictions to over-the-counter pills, get off of most of my prescription pain medications, reduce my anti-depressant; change two medications that had been key to keeping me well (one of them for nearly 20 years) to less broad spectrum and effective ones, stop my immune boosting injections… and then I had to prove that after all this I could stay well. After an appointment with a genetic counselor to consider the risks of passing on CGD, we decided to proceed. We also learned that we would be able to collect her cord blood at birth and cure her if she was affected.

It was hard. There was blood, sweat and tears aplenty. Then we still had the challenges most couples face trying to conceive, just with a whole lot more tests, supplements, doctor visits and medications.

For my 30th birthday, my husband organised my dream trip to Hobbiton in New Zealand. While we were over there, the magic happened! Until I saw that positive pregnancy test for the first time, I still couldn’t even accept the possibility of success but at that moment I knew it was going to be ok! I was very well for most of my pregnancy, but my pain increased towards the end, though still manageable.

There were several complications during the birth, which were not CGD related. A few days later the autoimmune side of my condition flared up, and over the next few months this continued to be a challenge, however, with the help and support of our amazing medical team we will be fine!

 

(Published April 2021)