“A Mother’s love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking.” – Helen Steiner Rice
When a lot of people think of seizures they imagine jerky movements from a stiff body – even I was guilty of that image in my head, but each seizure is different and the changes within the episode are so vast. But you would never know until you saw it for yourself. This is my experience so far with seizures.
Life was full on the second Charlee arrived, it was a perfect labour compared to my first but ended in me being knocked out for surgery following a postpartum haemorrhage and transferred to King Eddies on my own. The moment I got home my attention was fought over between a toddler, a newborn and my partner who just wanted some quality time together. A few months flew by thanks to sleep deprivation, my maternity leave was coming to an end and I was running out of patience being around the kids 24/7 so I made a plan to go back to work early. We were coming home from dinner when a car turned through a green light without giving way to oncoming traffic and we T-boned them (at that point this was the scariest night of my life).
Returning Back to Work
I started back at work the next week. It was only a week after the crash when Charlee had her first seizure I second guessed myself and called dial-a-doctor (or a similar service). Because at that point she was still responding to us, babbling, following us around with her eyes, it was only her tiny hand curled up in a tight fist tucked under her chin that was shaking discreetly. The operator said “if you think she’s having a seizure call an ambulance”. Between then and when we finally got into the hospital the seizure had gone over 40 minutes! Once she was stable and awake we were transferred to PMH to be monitored. The doctors assured me this was a once off thing (‘febrile convulsions are very common in babies’) but I knew this was only the start, as childhood seizures were in my family; still the Doctors were positive and so certain in their statements.
Another month after that she had her second. Nearly 3 months went by when we had put Charlee into day-care with her older sister as I was determined to have this ‘normal’ life. Within 2 weeks of day-care she had 3 seizures over a weekend, the last resulting in an induced coma; she was discharged with new anti-epileptic medication and we were so hopeful it would work. Another month and another seizure and another induced coma we were shattered, dosages went up and down and we realized the public medical system was broken as communication between specialists lacked and we had to keep up with all the details ourselves.
My partner was pushed out of his job as they didn’t like him having so much time off to look after his family, they told him he was taking the piss and that “you need to sort your personal life out”. I thought we would be supported by some sort of carers payment but everyone refused to sign documents about her condition, so I took on more hours at work and became the main income earner while my partner became a stay at home dad.
Life With a Sick Child
So far there has been two induced comas, three incubation’s, numerous drugs tried tested and failed. Charlee has had about 12 seizures (that we know of) within 8 months, each followed REturny hospitalisation of a few days. It doesn’t sound like much but they are fierce, I watched my baby turn blue while emergency operators advised not to start CPR until paramedics arrived. I had my heart crushed when they told me they couldn’t stop the seizures and had to ‘put her to sleep’. Time and time again I felt I had failed, as a parent I couldn’t save her I couldn’t ‘fix’ her episodes and on top of that the guilt of knowing the genetics had been passed down through me. I never asked for this, who would ever ask for this? How long before they damage her growing brain? How long can her body stand the cocktails of drugs? And will they ever go away?
While all this was happening I struggled to keep up with those around me; friends and family often came last, I just didn’t have the energy or time to focus on anything outside of Charlee. I was trying to keep up with my girls who were growing so fast, trying to research information surrounding my baby’s condition because doctors didn’t seem to have the time. Every GP/CHN/specialists visit is met with praise and that “she’s doing so well” or “there’s nothing wrong with her” but that doesn’t take away traumatic ED trips and the fact that there is something wrong that no one is willing to look deep enough into. Because they haven’t seen her at her worst, with tubes and wires coming from every inch of her, hooked up to machines to keep her in a ‘safe’ state giving her body and brain a rest before any real damage sets in.
A Mother’s Pain
I fight with my thoughts; ‘you have so much to be thankful for’, ‘you shouldn’t be grieving’, ‘some parents have it so much worse’ and so on. I listen to doctor’s terms that are so foreign they go straight past me, the same terms I quickly become fluent in. Nurses recognise us like we’re regulars at a local cafe, which I am extremely grateful for; you don’t realise how comforting a nurse can be when she too has witnessed the ups and downs of your child.
I am so lucky to have an amazing team of doctors and nurses at our local hospital that recognise our little girl, know the plan as soon as we come crashing through the ED doors and most importantly LISTEN and respect our wishes. We beg to stay local not to be sent up to Perth, we don’t qualify for accommodation at Ronald McDonald house which means our family is split up and usually your chances of sleeping on a chair or in your car are pretty high. PMH stays for us mean 140 km round trip each day plus parking, plus food, plus babysitters for the older sibling, plus days off work, plus medication the costs add up fast and before long we find our sanity has gone out the window and are desperate to be home.
So far it’s been nearly 4 months seizure free in our house and we feel as if it has been a lifetime since our last ED trip. Charlee is now on a different anti-epileptic drug that seems to be working (we aren’t holding our breath) and her action plan seems to work well. She is walking, talking, eating well and is smashing all the milestones for an average 16 month old. At the start of 2018 Charlee’s genetic testing results came back positive for the mutation of a gene known to be related to seizure disorders. We’ve been on this journey for more than 12 months without any real answers; we just don’t expect them anymore.
Things that I have learnt along the way:
- Do that first aid training course you’ve been putting off, if you can’t afford it google and YouTube is your next best bet as some first aid knowledge is better than none at all.
- If it’s not in writing it may as well not exists, (medical records, doctors’ advice etc.)
- Don’t be scared to share with strangers, on admissions they’re usually the only adult company you have as partners and/or family can’t stay.
- Go with your gut, your instincts are stronger than what most believe and remember no-one knows your child better than you.
- If you’re ever staying at PMH pop into Kalparrin, they are the nicest most amazing people I’ve ever had the chance to meet and I honestly wish there were more support centres around regional WA.
Here are some Websites and organisations that you may find helpful..