Based on an interview with Leiden McMahon, Dante’s mum (NSW, March 2023)

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Leiden McMahon comes from a large and loving family. And so, when it was time for her routine 25-week scan for her first child, both her mum and her grandma went along with her. The trio were buzzing with excitement. They were all distressed by what unfolded that day. During the scan, the sonographer told them that they could see 2 rhabdomyomas or tumours in the heart. When they asked what this meant, the sonographer told the shocked family that Leiden’s baby would be born with a severe disability and would not be able to talk or walk.

The 3 generations of this family were immediately heartbroken. They huddled together in the waiting room sobbing. Each and every one of them was absolutely devastated.

When she got home, Leiden started googling some of the terms the sonographer had used – brain tumour, rhabdomyoma and an assortment of other words she had never heard of before. It was during this search that Leiden first learnt that there was a possibility her baby might have TSC (Tuberous Sclerosis Complex).

Leiden phoned her birth unit at Liverpool Hospital in NSW and they told her to come straight in. Leiden says the hospital medics were ‘just lovely’. This team, which includes Clinical Geneticist and TSA Medical Advisory Panel member Dr Clara Chung, confirmed the probability of TSC and really helped Leiden and her family understand the disease and what it might mean for her baby. They also gave her the option to terminate her pregnancy, which she admits was a very weighty and difficult decision.

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Leiden says: ‘In many ways, it is thanks to the honesty of the team at Liverpool Hospital and the way they delivered information to us in such a balanced way that we went ahead with the pregnancy. I thank them for giving us Dante, as giving birth to him was one of the best things we ever did.’

For Leiden and her family, having such a caring and knowledgeable team of doctors by their side at the beginning of this terrifying journey was absolutely invaluable.

Dante was born in June 2019 and weighed in at a whopping 4.7kg. He showed a number of signs of TSC but generally was in good health. From there he would have EEGs every 6 weeks. At 3 months of age, due to an irregular spike on the EEG, Dante started on Vigabatrin as a preventive intervention. He didn’t have his first seizure until he was 22 months old. That was a terrifying event, lasting 3 and a half hours and Dante had to be incubated to make sure he kept breathing.

Because of this major seizure event, Dante now has to go to hospital every time he has a seizure. Thankfully, that is not too often. With just mild medication, Leiden says they have achieved reasonable seizure control. The only time he seems to be prone to seizures is when his immunity is low due to other conditions – like when he caught COVID last year.  And, she half-jokes, now that he is at day care 2 days a week, he is building up his immunity to all sorts of other infections!

The initial shock of the diagnosis is agonising. The first year is really hard but it gets easier. Ask for help and keep pushing and looking to get the supports you need
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Dante is now 3.5 years old. He has brain, heart, eye and skin symptoms of TSC. Leiden and her family are very aware of the need for regular surveillance and screening. Dante sees an ophthalmologist every 6 months, a dermatologist and a cardiologist every year and the family regularly visits the Sydney Children’s Hospital in Randwick for the TSC Clinic, MRIs and other screenings. As well as appreciating the wonderful health care professionals at the clinic, the family also feel fortunate that their local paediatrician coordinates Dante’s care. Leiden says: ‘Our paediatrician talks to all the health care professionals involved in his care and is across everything.’

Shortly after Dante’s birth, Leiden and her husband Chris both underwent genetic testing. The results showed that neither of them has TSC. Dante’s TSC is due to a spontaneous gene mutation (which happens in around 70% of TSC diagnoses). Because of this, the doctors advised that the chances of Leiden and Chris having another baby with TSC were very low. Of course, deciding to get pregnant again was still another very big and difficult decision for the couple.

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Dante’s younger sister Renata is now a one-year-old. She is every bit as wonderful as her older brother and she does not have TSC.

Because Dante is their first child, Leiden says it has been difficult not to compare him to other children and to look for deficits. Dante’s TSC means he is screened and scrutinised regularly and she sometimes feels there is almost too much focus on what he can’t do rather than the many, many things he has already achieved. At this point, Dante’s speech is a little delayed. He has regular sessions with speech and OT but he is otherwise a normal happy and healthy 3-year-old. In his family’s words, ‘He is just a cheeky little boy who loves singing and dancing.’

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Leiden appreciates the amazing support they have received from her wider family. They now live in a large 9-person household, which includes Leiden’s mum and dad, maternal grandparents and her uncle. She says her children, ‘always have lots of support and love on tap’.

When asked what advice she might have for other families dealing with a TSC diagnosis, Leiden says: ‘Don’t be scared to get help for your mental health. For me, the diagnosis was probably the worse I have ever felt. It was worse even than when Dante had his severe seizure. The initial shock of the diagnosis is agonising. The first year is really hard but it gets easier. Ask for help and keep pushing and looking to get the supports you need – whether that’s through TSA, your family and friends, your doctors, whatever. Hopefully, like our family, you will get to a point where you just feel blessed to have this wonderful child in your life and start to enjoy every day and every moment with them.’

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