When Erin Oudshoorn welcomed her beautiful baby girl Luella into the world, she could never have prepared herself for the pain and heartache that lay ahead for her family. Mummy Village’s Jaihden Mourtzis sat down with Erin, the mum behind little.lulu.love, whose daughter Luella was diagnosed with Infantile Spasms at just 11 weeks of age. According to The Epilepsy Centre Infantile Spasms or West Syndrome as it is often called is a rare form of epilepsy that usually begins between 3 to 8 months of age. It is characterized by clusters of spasms, which are sudden, brief, and often severe muscle contractions. These spasms can occur several times a day and can cause developmental delays and cognitive impairment if left untreated. Luella is one of 2500-3000 children diagnosed globally each year.
Luella’s diagnosis at 11 weeks of age is considered to be very early onset for this particular type of epilepsy, as Erin explains, ‘her original diagnoses of Infantile Spasms were very small jerks that looked like little jolts, where the arms fly up the sides and the knees crunch up, there was also a lot of eye deviation involved.’ Infantile Spasms, generally only last a few seconds, and often occur in clusters that can comprise up to 100 hundred spasms, though the child may cry during or after a spasm, they usually seem to relax between clusters. The time between clusters can vary from seconds to a day.
So far, doctors have been unable to find a cause for Luella’s epilepsy, Erin says that ‘her doctors assume that her brain didn’t form properly in utero so structurally her brain is not complete, which means that all of the tiny little folds that you see in the brain, they assume that some of those are either too wide or too narrow which interrupts the neural pathways and the messages through the brain’. Some of the known causes of Infantile Spasms include genetic disorders, brain injury and, metabolic disorders.
There is a range of medications available to treat infantile spasms including, prednisone/prednisolone a steroid that is given by mouth or adrenocorticotropic hormone, a steroid that is injected directly into the muscle, Vigabatrin a medication prescribed twice a day, in cases where those treatment options are unsuccessful other medications such as valproate (Depakote), Topiramate (Topamax), pyridoxine (vitamin B6), Zonisamide (Zonegran), Clobazam (Onfi) or Clonazepam (Klonopin) may be trialled. ‘Unfortunately, Luella has tried about 15 anti-epileptics that have not worked’ and as Erin goes on to explain, the only treatment option left for her daughter now is major brain surgery which she describes as very risky.
Erin made the decision to start sharing her family’s experience with Infantile Spasms in 2020 through her Instagram page, little.lulu.love. Today Erin has over 22k people who follow Luella’s journey. About the decision to start sharing on the social media platform 8 months after Luella’s diagnosis, Erin says,
‘I hadn’t been ready to share up until that point as there was just so much guilt that I was battling, even though I knew there was nothing that I could have done differently, there was still that element of shame, but not shame of her, the shame of what happened, why did this happen, what did I do. There is so much head noise that comes with a diagnosis like this. I really went to ground, I’d shut off and I had shut people out, and then I realised that that just wasn’t working, it was time to share. And it was the only thing that felt good, it became very cathartic.’
Another big motivation for Erin in sharing Luella’s journey was to spread awareness about the condition ‘I really didn’t know a lot about epilepsy, most of my family knew nothing about epilepsy, it is (one of) the world’s most common neurological disorders and I just found that it was time to shine a light on the condition in order to educate and make people aware that this condition exists and that it is horrific.’ With just a quick scroll through Erin’s feed, you will see that she holds nothing back, she is completely transparent about their family life and the effects that Infantile Spasms have had on it, ‘I think I say what a lot of people in my shoes think and I think that there are moments that resonate with other people’s journey with a medically complex child. I know this because a lot of mums contact me privately and tell me how much they relate.’ Although Erin has received some negative Instagram comments, as most people with large followings do, she says that she now tries to not let them affect her,
‘I am very lucky that the community we have there (at little.lulu.love) are absolutely beautiful human beings. I feel so privileged that they would want to engage with my beautiful daughter and me as a byproduct of that I feel so grateful that there is so much love coming our way’.
‘The guilt is so multifaceted and it looks different on different days, even at different hours of the day but it has evolved now.’ In May 2022 Erin and her partner Dave welcomed their second child, a baby boy named Thomas.
‘Like any mum transitioning from one child to two, it’s learning how to divide your time. There is also an element of guilt because I know that Tom will be a typically developing child and so it’s leaning into that and allowing myself to enjoy the moments with him that I didn’t get to enjoy with Luella. It’s this balancing act of enjoying that and then the sadness of knowing that I missed out on it with Luella. In the same breath, it’s enjoying that time with Tom but knowing that my daughter can drop to the floor at any time and have a seizure and then feeling guilty for having enjoyed the time with the other child. It’s trying to balance all of that.’
When it comes to dealing with the guilt, a sense of losing herself, and coping with the fact that her family’s life is completely different to how she expected it to be, Erin says that she now sees a therapist regularly and has started taking anti-depressants.
It’s often hard to know the right thing to say when talking to the parent of a medically complex child, Erin’s advice,
‘Sometimes I just want someone to say, that is sh*t, I am so sorry that something so awful exists!’
She also says that she appreciates when people are genuinely curious and want to know more about Luella’s condition. And if you are wanting to do something to help a tired, stressed-out parent, the best thing you can do according to Erin is;
‘Ask their partner. As a mum if someone says to me hey Erin is there anything I can do for you, I never want to be a burden so I’m always going to say, no I’m fine, but if you went to Dave, he would be like, Erin is desperate for a massage or a facial or she really needs a girls night, maybe you could take her out for a glass of champagne.’