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For as long as she can remember Lisa always wanted to be a mum. As a child, when people asked her what she wanted to be, the answer was “a mum”. She wanted a huge family (11 kids and a bus to be honest), but she was in for a rude awakening.
When Lisa was 12, she did some research on her genetic condition Chronic Granulomatous Disorder (CGD). According to the literature of the day and her doctors, she realised it wasn’t possible which left me devastated. Lisa genuinely believes this was the root of her subsequent depression and suicidality which lasted more than 15 years. She cannot describe the pain she carried with her.
In 2016 Lisa moved to Tasmania and while attending a conference hosted by the Immune Deficiencies Foundation of Australia, she met an internationally renowned specialist in CGD from France. Lisa asked if there was any research or new treatments on the horizon that one day might mean she and her husband could be parents. He was seemingly shocked at their question and told them that in France they 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 Lisa’s life. She had to get fit and healthy; quit smoking, defeat her addictions to over-the-counter pills, get off of most of her prescription pain medications, reduce her antidepressant dosage, change two medications that had been key to keeping her well (one of which she used for almost 20 years), stop her immune boosting injections… and then she had to prove that after all this that she could stay well.
After an appointment with a genetic counsellor to consider the risks of passing on CGD, Lisa and her husband decided to proceed. They also learned that they would be able to collect their baby’s cord blood at birth and cure her if she was affected.
It was hard. There was blood, sweat and tears aplenty. They also had the regular challenges most couples face trying to conceive, just with a whole lot more tests, supplements, doctor visits and medications.
For Lisa’s 30th birthday, her husband organised her dream trip to Hobbiton in New Zealand. While they were over there, the magic happened! Until Lisa saw that positive pregnancy test for the first time, she still couldn’t even accept the possibility of success but at that moment she knew it was going to be ok! Lisa was very well for most of her pregnancy, but her 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 Lisa’s condition flared up, and over the next few months this continued to be a challenge, however, with the help and support of her amazing medical team she will be fine.