It’s Friday night. I’m sitting on the couch, across from Lulu. She’s pottering around in the middle of a pile of toys, completely engrossed in inspecting and testing each item. She catches me watching her and breaks into a grin. “Ma-ma-ma-ma”
I can’t help but think of another Friday night halfway through June this year, Tony came home from work to find me in a quiet panic, holding Lulu and trying pretty unsuccessfully not to let Buddy see my tears.
Lulu had been doing some funny little clenchy movements through the week, kind of hunching her chin down and lifting her arms. They were over so quickly it was hard to put your finger on what you’d just seen. I feel a bit silly now, but she’d just started on solids and was having a few, errmm, digestive problems…. I had put it down to that.
That afternoon she did it again, stronger and for longer than before. I got a good look at the whole episode for the first time, and I knew it was more than a digestive problem. I Googled “infant seizures” and found YouTube clip after clip of other six month old babies doing the exact little jerky, clenchy movement Lulu had been doing. One in particular said “If your child is having seizures like this, calmly pack your bags and take her to the nearest hospital”.
We took her to A&E. As soon as the woman on the desk heard ‘seizures’ she zoomed us through. A pediatrician observed her for a couple of hours, then admitted us for a week.
We were in shock.
Our beautiful, healthy, happy little princess had chaos raging in her brain, and we were completely out of our depth.. Not a thing we could do but hold her when her tiny body jerked, her eyes wild and terrified. I remember holding her and stroking her head, saying “Shhhhh Mummy’s here, it’s ok, Mummy’s here” and thinking “What am I saying – Mummy has no tricks up her sleeve to fix this one”.
We have this beautiful friend called Natalie. She will go down in history in our family for lots of reasons, but mostly because of the rescue brigade she brought to us that week. I sent her an SOS txt, and she mobilised a network of people all over the country and overseas to pray for Lulu. On the Sunday, our church plus two other local ones dropped everything in their morning service to pray for us. A constant stream of food and messages came to our hospital room, people we hardly knew came to lay hands on Lulu and pray. Another incredible friend, Wendy, came and sat with us as we listened to the pediatrician confirm our worst fears: Lulu had Infantile Spasms, then stayed with her so Tony and I could get out in the air and hug and cry and process.
Infantile Spasms, sometimes known as West Syndrome, is a rare-ish and random-ish neurological condition which affects one in around 3200 to 3500 babies. It shows up some time around the sixth month. The prognosis is not good – brain damage is generally on the agenda, and other scary words like Autism, Psychological Disorders and Epilepsy flutter through hospital corridors like malevolent butterflies.
A brain wave scan produced a printout that could easily have come out of a Christchurch seismograph. Her brain activity was all over the place. An MRI scan (a nightmare in itself) crossed tumors off the list of things to worry about, but didn’t answer any questions.
Lulu was in the ‘best case’ category: her seizures were idiopathic (no visible cause), she’d had no other symptoms, she was otherwise healthy and developing normally. She was diagnosed within 24 hours of our arrival at A&E and that day we started her on an adult dose of steroids for five weeks.
The seizures stopped within hours of starting the medication. The treatment took its toll on her – she couldn’t sleep, she was ravenous and cranky all the time, the light went out of her eyes, her cheeks puffed up like a Chipmunk. Her development went on hold. She didn’t smile or sing or ‘talk’ or pick up any new skills for a total of eight weeks, till the drugs started to leave her system.
But the seizures haven’t come back.
The Child Development Team is monitoring her. She’s doing a few things a wee bit out of order, but her development is basically where it should be for her age.
A follow-up brain wave scan shows normal brain activity.
It’s like it never happened.
So what did happen? The medical community can’t explain it. We believe she was healed by God, through a million prayers; our pediatrician’s speedy action and amazing care, the right prescription; and lots of love.
She’s singing happily as I write this, testing the limits of a yellow plastic swordfish from her brother’s fishing game. Her last seizure was on the 19th of June, our first morning in hospital (and Tony’s birthday actually) and the words that flutter through hospital corridors when we go back for checkups are ‘delighted’ and ‘excellent progress’ and ‘extremely hopeful’. They are benevolent butterflies now, all the colours of the rainbow.
Lulu this morning, photo by Buddy.
Somebody sent us a link to this video on the darkest day, it simultaneously pulled the rug out from under us and gave us incredible hope. The Dad that made it puts our feelings into words better than we’ve been able to.
Job 2:10 “Shall we accept good from God, and not trouble?”
What a beautiful post. May your miracles continue and the butterflies of joy always fill your garden.