A mother’s intuition

By Melanie Bisschops

My newborn son suffered a perinatal stroke at three weeks of age.

I noticed Lewis was having some odd jerking movements in his legs while he was asleep. Having two older children, I knew his movements weren't normal and started to film them. I called Health Direct who said it sounded like a normal infant reflex movement and if I was concerned, to take him to a GP the next day.

Over the next few hours, the jerking movement got worse, so I took him to the Perth Children's Hospital. My husband had COVID-19 and was not allowed to come with us. We presented to the ED late on Thursday night and while the doctor checked Lewis over, I showed her the videos I had taken.

The ED doctor told me that the movements were likely benign myoclonic jerking, which is normal during sleep and wanted to send us home.

My instincts told me that something was wrong, Lewis was also very lethargic and after the ED doctor consulted with a senior doctor, they advised that they would keep him overnight for observation.

While in the ward, in the early hours of the morning, the jerking became more intense and had started to happen while he was awake. Lewis was then given an EEG and it showed that he was having seizures, but they didn’t know why. Lewis was put on medication (Keppra) immediately, which stopped the seizures.

Two days later he had an MRI to investigate what was going on in his little body. That’s when they realised that Lewis had suffered a ‘left anterior middle cerebral artery territory stroke’.

We were devastated and in utter shock. We didn't know that babies could suffer strokes, we associated them only with the elderly.

We didn’t know that the jerking movements were how seizures presented in newborns and that along with lethargy can be a sign of a perinatal stroke. Lewis presented to the ED with both symptoms of a perinatal stroke, not benign myoclonic jerks.

We were in hospital for almost two weeks, and after multiple tests, including EEGs, blood tests, ultrasounds and failed lumbar punctures, they could not give us a reason for the stroke. It was most likely a blood clot, but they weren’t sure. Lewis was put onto aspirin as a precaution.

We were thrown into an unfamiliar situation, without guidance. We were too distraught and overwhelmed to seek out help or information ourselves. I was still in that raw postpartum stage, trying to juggle children, a newborn and now a catastrophic medical event.

It wasn't until a friend reached out, sent me some resources and a link to the Little Stroke Warriors Facebook group that I found the support and guidance that I needed. It was vital to connect with parents who knew what we were going through. I can’t thank my friend and this community of families enough for their amazing support in those first few weeks after Lewis’ diagnosis.

We had to wait for three months after hospital discharge to see the neurologist. During that time, we had not been offered the chance to start any early intervention from the hospital - it was just "wait and see" until our neurologist's appointment.

We went to a private physiotherapist as we’d noticed Lewis' right side was not moving as much as the left. The physio did an assessment and gave us some helpful information about what we needed to do such as early intervention therapy, intensive therapy and to eventually request NDIS funding to support the therapies needed.

Finally, at our neurologist appointment we raised concerns about Lewis' right side, and he was referred to the early intervention clinic. Four months after his stroke, Lewis started physio, hydrotherapy, occupational therapy and speech therapy. He would get fatigued very quickly in the first 6-8 months of therapy, the long journey to and from the hospital added additional strain on him but he slowly seemed to adjust.

When Lewis was one year old, he was diagnosed with Global Developmental Delay. This diagnosis brought on another wave of grief, anxiety and fear for his future. After this diagnosis we reached out to the IBIS program, through Ability WA, and started at-home therapy in conjunction with the hospital therapy. Lewis responded extremely well to his therapy sessions in the comfort and familiarity of our home.

Now, our precious little boy is 18 months old. He can sit on his own and move out of a sitting position to lying down. His upper body strength is weak from his stroke, and his right side slightly weaker than the left. As Lewis develops, he will most likely skip crawling, and fingers crossed he will walk by his second birthday. Currently he is able to stand with support, is learning to use both hands at the same time and play intentionally with his toys.

Lewis can say ‘dadada’, and a few other sounds. He has worked out his own way to communicate. Lewis is a happy and social little boy who loves being around his family and friends. We have successfully weaned him off Keppra, and he is almost weaned off aspirin as well.

We were unprepared for how mentally draining therapy is. There are so many appointments, so many things to remember and implement day to day. We didn’t realise how hard it would be for Lewis to learn any new skills and just how repetitive we’d have to be in order for him to learn what comes naturally to other children. The days are hard, but it is extremely rewarding when you see him hit a milestone that he's worked so hard to achieve.

We’re currently in the process of moving from hospital-based therapy and IBIS program to private therapy in the home through NDIS funding. But trying to navigate the NDIS and finding therapists without long waitlists has been challenging in itself. We had fantastic therapists, so we want to make sure we transition to equally experienced early intervention therapists at home. We are extremely lucky to live in a country with hospitals that offer early intervention therapy for children, the In-home Baby Intervention Service (IBIS), to have regular monitoring by various specialists and to have access to the NDIS.

If I can offer any advice, it is to get your children early intervention therapy as soon as you can. In our experience it makes a huge difference.

The second piece of advice is to look after your own mental health and not be too hard on yourself. Seek therapy for your own wellbeing, to help you navigate the life you are now living. Find yourself a support network, whether it is online or in person, to connect with families who are in similar circumstances, so you do not feel so alone.

Lastly, we would like to raise awareness for the noticeable signs and symptoms of perinatal stroke. To trust your parental instincts when something doesn’t feel right, especially when obvious symptoms are being overlooked.

I am extremely proud of my family, and we are finding our way through the labyrinth that is childhood stroke.