My baby’s fight for life after stroke
By Sarita Vilkins
When our son Shepherd entered the world, almost immediately he was having seizures. The doctors and nurses were giving him every drug trying to get his seizures under control but unfortunately, they continued non-stop for weeks. An MRI confirmed Sheppy had a large left side MCA (middle cerebral artery) stroke.
The hospital experience for me was a nightmare. I was told numerous times Sheppy wouldn't make it out of hospital and if he did, and I quote, 'he would be a vegetable'. A specialist gave me a Cerebral Palsy GMFCS (Gross Motor Function Classification System) Level leaflet and pointed to Level 5. They began telling me everything that was going to be wrong with him. Shepherd was only 4 days old at the time.
After almost three months in hospital, we were able to bring Sheppy home. We were lucky in a way as we had a diagnosis of right-side hemiplegia cerebral palsy very early on. We soon learnt Sheppy was using his left hand for everything and found ways himself of picking up toys, holding a bottle etc
Sheppy was doing so well, and we were seizure free for almost 2-and-a-half-years, then my worst fear became reality. Sheppy’s seizures returned, stronger than ever. He was having hundreds of seizures daily. We tried a concoction of drugs, the keto diet, CBD oil, we were even looking at stem cell treatment overseas, but nothing was stopping them.
When someone is classified as having 'drug resistant epilepsy', they present surgery as an option. My husband and I went into the appointment with our neurologist thinking they will find out where the seizures were coming from and disconnect it. How wrong we were. He began telling us the Shepherd was a strong candidate for a hemispherectomy surgery, this is where they remove or disconnect one side of the brain from the other. In Sheppy's case this meant removing the left side of the brain.
The decision regarding the operation was not something I wished upon my worst enemy. What if the surgery doesn't work? What if he comes out worse? What if he doesn't make it out of the surgery? But what we had to keep telling ourselves is what happens if we don't do the surgery? We were told by numerous specialists and surgeons if we chose not to operate Sheppy wouldn't see his 18th birthday.
September 15, 2020 was the day our lives changed.
We went into the hospital hyper focused on one goal: seizure freedom. We didn’t realize the other scary things that would come after; drains, more surgery (to fix drainage issues), stitches, equipment, ramping up therapy, meningitis, shunt issues, more surgery, viruses, neuro visits, more medicine than I care to see pumped into my son’s body…Oh and did I mention more surgery!?
Overall, it was brutal with lots of sleepless nights spent online researching, reading doctor bios, talking to every mum in every forum I could find who has walked this path before me, picking up the newest book about neuroplasticity and the list goes on. Oh, and to top it off, did I mention I had a newborn at the time? Luckily, we had a great support team around us with family and friends.
A hospital is a funny place where the highs are high and the lows are low. You don't dare let yourself think about what’s next. I feel like, if for the slightest moment, I began to let myself feel happy, something bad might happen.
I know we could have lost Shepherd from the stroke. I know other mamas who have lost their children and would be forever grateful for their babies to be here – therapies, doctor appointments, medications – and all. I am not naive to think it’s very possible that could have been me, too. For that, I am so incredibly thankful for Sheppy.
To all the parents facing a journey of the unknown you will become tougher and stronger, more so than you could imagine. You will have a beautiful new perspective on life, and along the way become more grateful, especially for the little things. You will be inspired by your child, and you will inspire others going through the same journey.
Shepherd is our amazing little warrior. He has learnt how to walk twice and continue to defy the odds. The surgery was a success as it stopped his seizures, however unfortunately Sheppy has experienced significant cognitive regression. He could talk, but now grunts. His little spark and his love for dancing has disappeared. His surgeon is certain it will all return in time, as he was talking initially after surgery.
Shepherd will be five in April and he has opened my eyes wide to a life I never knew I was made for; being his mumma. Shepherd was made for GREATNESS and I can't wait to continue to watch it unfold.
Childhood stroke statistics
- Approximately 600 Australian babies and children have a stroke each year.
- Stroke is among the top ten causes of death in childhood with the highest mortality in the first 12 months of life.
- Approximately one third of all cases occur in children less than one year of age.
- 50-85 percent of survivors of stroke will be left with long term problems which may include seizures, physical disability, speech or learning difficulties.