There are people who talk about birthdays as milestones, but two years ago my birthday was completely overshadowed by a much more significant event. It was two years ago that we were first told there was “something wrong” with Lil Z. And two years ago that she had her first major seizure. It changed a lot in my life, rearranged my priorities, taught me that I really can be a grown up and deal with scary situations and has opened my mind to things I’d never contemplated.
There was a lot of drama before Lil Z was born, not the least because I was 10 weeks pregnant when we moved from London to Brisbane. Lil Z was one of twins, and we discovered at my 13 week scan that the second twin had died. Since both babies had been healthy at 9 weeks, it was a huge shock and it took me a long time to come to terms with it. For a long time I could only think about the baby I’d lost, not the healthy one I still had growing inside me.
Once I managed to mentally return to focusing on the remaining baby, more drama arose. At my next scan, the doctor raised concerns with her brain. The main issue was that a ventricle in her brain was enlarged. All sorts of horrible scenarios were mentioned. I was sent for numerous scans, a fetal MRI and pressured to have an amniocentesis (which I refused). At last, my obstetrician declared the other doctor was stressing me out too much and sent me to another one. He did a scan and declared that the enlargement was borderline and told us to go home, have our baby, and love it, and deal with any problems if and when they arose. It turned out to be some of the best advice we got.
Lil Z was 11 days late, so I was induced on 29 March 2011 and 3 painful hours later, Lil Z arrived in the world. She was a typical newborn and passed all her tests and examinations, including an ultrasound on that questionable ventricle, that was declared to be completely normal. We went home from the hospital, eager to get on with life.
Unfortunately, Lil Z was a terrible breastfeeder. I thought it would be easy, as I’d breastfed Vegemite without an problems, but Lil Z just couldn’t seem to latch on, and when she did, it was intensely painful. Things seemed to get worse instead of better and I ended up expressing and feeding her by syringe some nights. After nearly a week, a wonderful midwife examined Lil Z and declared that she had a tongue tie that was preventing her from sucking. Although she’d lost a lot of weight, the midwife suggested we get the tongue tie snipped and see if she would begin to feed better before readmitting her to the hospital. Fortunately, although Lil Z was never a champion breastfeeder, she improved considerably. By this time my milk supply was out of whack and we were doing supplemental feeds with formula.
I mention the feeding problems because I think we attributed a lot of Lil Z’s initial developmental problems to her “slow start in life” caused by the tongue tie. Vegemite had been early to hit all her developmental milestones and everyone reminded us that we couldn’t compare Lil Z to her. So, we tried to relax, not worry, and let her develop at her own pace.
She was a bit of a Jekyll and Hyde baby. One day she’d happily play on her baby gym for ages; the next day she would scream inconsolably for 6 hours straight. I now suspect that the screaming was the result of absence seizures that we missed. She didn’t make consistent eye contact and very rarely smiled. Her neck was also quite wobbly. I think both QB and I suspected there was something wrong, but pushed our worries to the back of our minds, attributing her slow development instead to her tongue tie and declaring her a “late bloomer”.
It wasn’t until her vaccinations at 5 months when our GP gently asked me if I had any concerns with her development that it became clear it wasn’t just a “late bloomer” issue. When I confessed that I did have concerns, the GP said she did as well, and referred us back to the paediatrician Lil Z had seen at birth.
It was little over two years ago today that we went back to see that paediatrician. I never did like him much, but at least he was familiar. He examined Lil Z, confirmed that she had developmental delays and that she would be disabled – physically and potentially intellectually – for life. He stressed that we should not kid ourselves into believing that it was something she would outgrow – it was going to affect her for life. Then he floated his theory that she had cerebral palsy. He ordered some blood tests and a MRI of her brain, gave us a card for a physiotherapist and sent us home. I remember getting into the car in the parking lot with QB, both of us utterly stunned, and telling him not to say a word to me because I didn’t want to cry.
There was, however, plenty of crying in the days that followed as we tried to come to terms with what we’d been told.
And then, on 3 October 2011, Lil Z had a massive status seizure that lasted for nearly an hour, during which time she stopped breathing twice. She was in the PICU for 3 days and on the ward for another two. The doctors declared it was a febrile convulsion, brought on by a virus, but less than two weeks later it happened again, and then again. After three seizures, Lil Z was put on her first anti-seizure medication. And we haven’t really looked back since.
Things have changed a lot since then. Mentally, QB and I have had to come to terms with having a daughter who may never talk or walk and might always be dependent on us. And our plans have had to change. Our expectation that we’d become an international family, moving with QB’s company to different exotic locations every few years, has been scrapped in favour of staying in Australia where Lil Z is receiving excellent medical care and therapy.
There have certainly been challenges over the past two years. The worst has been managing Lil Z’s seizures – which also links closely with her sleep and her general happiness. She rarely slept for more than 2 hours at time until she was over 1-year-old – pushing me to my limits. The seizures also meant that her development didn’t move forward, which was not only frustrating, but also made me worry about her future.
I’m under no illusions that her seizures will stay under control forever. Children seem to often go through seizure-free periods, only to inexplicably begin to have them again. And girls with CDKL5 and Rett Syndrome also sometimes regress in their development during these periods. But I’ve learned from Lil Z not to worry too much about what might be and simply enjoy that she is doing well at the current time.
Lil Z’s sudden refusal to eat was also hard, potentially more so since I look back on it and wonder if there is something I could have done differently. I still look at this picture, taken on Pancake Day, when Lil Z (age 1 year) ate an entire pancake that I cut into tiny pieces and put in her mouth and wonder what went wrong.
Within 7 months of the photo she was no longer eating any solids at all and refusing to take a bottle. I would get up numerous times in the middle of the night to try to give her a bottle – because only when she was half-asleep would she feed. A month later she was being fed by NG tube, and has refused all oral feeding since. This breaks my heart. But at the same time, her NG tube then PEG then mic-key button have meant that we know she’s getting all her meds, every time, and without drama (holding her down and trying to syringe meds into her mouth and force her to swallow them was horrific). Her seizures have decreased and her development has skyrocketed since we started PEG/button feeding.
And I’ve been impressed with myself about how well I’ve mastered the enteral feeds. I used to be someone who couldn’t watch an injection on tv, who didn’t have a clue about first aid and who felt squirmy and uncomfortable talking about bodily functions. The past two years has changed that. I can pop Lil Z’s mickey tube on and give her a feed while keeping one eye on my iPad. Yes, I still managed to forget to unclamp the tube last night, resulting in her feed going all over the bed instead of her tummy, but I never claimed to be perfect… I have managed a whole range seizures in a whole range of situations, and despite a few moments of panic, have managed pretty well. I have arranged and coordinated appointments, travelled to places in Brisbane I’ve never heard of, and balanced work with Lil Z’s needs (never quite as successfully as I’d like, but then again, I’m still employed, so I can’t be doing too badly).
What I’m not going to do is declare the lessons I’ve learned over the past two years, because there aren’t any. What I have learned is that when you love your child, you’ll do whatever you need to do to keep them healthy, happy and safe. So, for those of you who say “I don’t know how you do it” – actually, you do, because if it was your child, you’d do it too.
So, it’s been an intense two years. But reflecting back on it as I write, I’m amazed at how well QB and I have managed (a fair bit of snapping at each other aside). Life is different, often frustrating and worrying, but when I go to check on the girls asleep in their beds at night, I’m still astounded by how lucky we are to have two such amazing, beautiful daughters.
One of those Facebook articles that circulates around caught my eye not too long ago. It was titled “10 things to say to a mother of a special needs child” (as if we’re a strange breed that you need coaching and preparation before approaching, hands in front of you and making no sudden moves…). Among the top things this post recommended was saying how sorry you were that the mother has a disabled child. I strongly recommend you do not use this approach with me. Two years ago, my life changed dramatically and it will never be the same again. But I’m definitely not sorry about it.