When she was about ten months old, and just at that ‘pulling herself up on the furniture’ stage, Sophia slipped, lost her grip on the edge of the sofa and fell over backwards, banging her head on our wooden floor. I was sitting on said sofa at the time, and I reached forward to scoop up my sobbing little girl. As I laid her against my shoulder I felt her go all floppy. When I looked at her, she had lost consciousness. Still holding her, I sprinted across the room to grab the phone and call for an ambulance, but by the time I got there she had come round and was crying again, so I phoned my good friend and neighbour instead.
She rushed round, her own daughter in tow, and between us we agreed that Sophia didn’t seem ‘right’. She didn’t greet my friend the way she normally would, she was quiet, and frighteningly pale. I decided it was better to be safe than sorry, and took a taxi to A&E. A few hours, a lot of kind NHS staff, and a leaflet on care following head injuries, later and I was reassured that she didn’t have concussion. It was a frightening experience, but I thought no more of it until a couple of months later when I had left both children alone for a few moments while I started tea, only to hear mingled screams which had me dashing out of the kitchen in record quick time. Anna had been trying to pick Sophia up, and she had somehow slipped backwards out of her arms, banging her head on, you’ve guessed it, the wooden floors. Suddenly our beloved original Victorian floorboards didn’t seem such a good idea, and I fervently wished for shag-pile throughout. I picked Sophia up to comfort her, and was standing in front of the hall mirror when I saw in the reflection the colour drain from her face, her eyes roll back in her head, and she passed out. She came round again almost instantly, but it was another trip to A&E to check she was alright. Thankfully, she was.
Both times, after receiving a clean bill of health, I almost wondered if I had imagined the incident. Had my anxiety caused me to see symptoms which weren’t really there? I was able to dismiss that idea in February when Sophia tripped over my stretched out legs (which she had been using as a climbing frame) and bumped her head. I picked her up, she immediately lost consciousness. This time it was a Sunday afternoon, and husband was at home. I screamed for him, and he came running downstairs, took one look at the pallid, floppy bundle in my arms and called for an ambulance. While he was talking to the operator she came round, and we were advised that, given she was now conscious and the ambulance service was experiencing very high demand that afternoon, we should just take her to A&E in a taxi.Yet again I was reassured that she didn’t have concussion, but this time the doctor I saw felt that she should be referred for an assessment by a paediatrician in case there was an underlying health issue.
In April she was diagnosed with Reflex Anoxic Seizures. These are a totally harmless form of seizure which tend to affect very young children. When they are shocked by something like a sudden pain (such as a bang on the head), their vagus nerve, which controls blood supply to the brain, temporarily constricts, meaning blood to the brain stops, the heart stops, breathing stops. When I had described Sophia as looking like death, I hadn’t been employing writerly hyperbole or maternal exaggeration. Luckily, as soon as the child loses consciousness, the vagus nerve begins to function again and everything gets back to normal pretty quickly.
We were hugely reassured that it was nothing serious, and I also felt vindicated at how worried I had been when the paediatrician described the attacks as ‘truly terrifying’.
Since April she has had two more minor episodes, but with the paediatrician’s reassurances ringing in my ears we coped perfectly well with both of them at home. Sophia is very washed out and tired afterwards – perfectly normal – and so it was really a case of giving her a bit of extra TLC and a chance to rest.
Then, a week last Sunday, my world shifted a little on its axis.
Sophia and I were on our own in the house as husband had taken Anna off to the park with her friends and their dad. It was a beautiful sunny afternoon, and we were both sitting at the little table in our garden, Sophia tucking into an apple for her afternoon snack.
I don’t quite know what happened. She was right next to me, close enough to touch, but she wiggled a little in her (non highchair) seat and somehow fell through the back of it, straight onto her head on the concrete patio.
She screamed incredibly loudly, and I knelt next to her and pulled her onto my lap. She immediately went floppy and lifeless. I can’t imagine I ever won’t find that experience terrifying, but I kept calm, telling myself it was just one of her attacks, and would pass shortly. We had been advised that, while she is unconscious, it is best to put her in the recovery position in case she is sick. I was just about to do so when her limbs started to twitch as though she was having a fit. Really frightened now, I laid her down on the patio. I had a sudden, sickening remembrance that she had been eating an apple when she fell, and I was scared that she was now choking on it, that these convulsions were caused by that.
The sight of her lying on the patio, eyes closed, skin a bluish grey, not showing any signs of breathing, completely still bar these unnatural seeming and increasingly feeble twitches, will haunt me for a very long time.
I tilted her head back and opened her mouth, searching desperately for the piece of apple I feared might be choking the life out of her in front of my eyes. I couldn’t see anything, but she was still unconscious – and this now felt like far longer than she had been in any previous attack. What should I do now? Start CPR? Or phone an ambulance? I screamed as loudly as I could for help, praying that some neighbours might be out in their gardens, but there was no response. I could feel time ticking away. I ran into the house to get the phone – it wasn’t on its stand, and I couldn’t remember where my mobile was. I saw it on the kitchen worktop, grabbed it, and ran back to Sophia.
Suddenly I couldn’t bear seeing her lying on the concrete any longer. I scooped her up in my arms, and ran into the house, on the phone to the ambulance operator as I did so. I opened the front door so that the paramedics would be able to get in, and laid Sophia down on the rug in the living room.
The operator was amazing, calming me down, reassuring me that help was on its way, keeping me clinging onto sanity by reminding me that Sophia needed me. At this moment I was pretty convinced that she was dead. I am in tears writing this, as the bleak, blank terror of that moment washes back over me. I pulled up her little t-shirt so I could watch for breathing and feel for a heartbeat, and to my delighted amazement I could see shallow breaths. Not right, not normal, still horrifically scary, but there was room for a smidgeon of hope. She was still unconscious, and if her eyelids flickered open momentarily the eyes behind them were blank, and would instantly roll back again as my baby vanished back where I couldn’t reach her.
She came round as the paramedics arrived and checked her out, reassuring me that she was in no immediate danger. For the next two hours she was technically with me, but she wasn’t my Sophia. She didn’t talk or play or move or show any interest in anything. When my husband arrived at the hospital she didn’t seem to recognise him. My fear now was that she was severely concussed, or that somehow the oxygen deprivation had damaged her brain. Then suddenly, at 6.30pm, two and a half hours after she fell, normal service resumed. She smiled at me and said my name – the first time your baby calls you “Mummy” is sweet, but nothing compared to the blessedly sweet relief of those two syllables this time. She ran over to the toys in the waiting room and began to play. I asked her where Daddy was and she looked round the waiting room until she found him and exclaimed “Daddee!” with all her usual joy and excitement.
We weren’t quite out of the woods. In view of the length of time she had been unconscious and her abnormal behaviour afterwards, it was decided she should have a CT scan and be kept in overnight for observations. Not the best night of my life by a long way, and the image of her, heartrendingly tiny, going into the adult sized CT machine is another one which lingers painfully in my mind. But finally she was declared healthy, and we were free to go. The consultant we saw that morning is fairly certain that it was ‘just’ another one of her seizures. We will return to outpatients for her to have a few more checks, but having since browsed the excellent support website for patients and families with this condition, it seems that the jerking limbs which frightened me so much, the prolonged unconsciousness and the altered behaviour afterwards are all fairly common.
I am, needless to say, hugely relieved. We are unbelievably lucky. I know anyway how lucky I am to have my two gorgeous girls, but having felt that I was on the brink of losing one of them brings that feeling into painfully sharp relief. But. But. But. I am not okay. As a parent you are always vaguely aware of the potential hell that is harm coming to your child. But now I feel I have looked right into that abyss, not in a hypothetical scenario, but right there on a sunny afternoon in my own garden, confronting the seemingly lifeless body of my precious baby and my own total inadequacy in knowing how to help her.
There is also the knowledge that for some parents, some children, some babies there isn’t that amazing wash of hallucinogenic relief when you realise it’s all alright. While I was in A&E the nurse who was with us had to dash off to a cardiac arrest. I don’t know if that child survived. For some families the nightmare becomes a hideous reality and my heart aches for them, even as I feel guilty at my own undeserved good luck. But I also feel that though we may have dodged the bullet this time, the whole experience has highlighted the agonising fragility of life and it scares me. Terrifies me. It is illogical, probably illogical, but I can’t shake the image of my little family being balanced on a tightrope of good health and good luck, and one false move could send us tumbling into the void.
Why have I written this? Mainly because writing is what I do, and I am hoping that committing the demons to paper might help clear them out of my head. If I can raise awareness of Reflex Anoxic Seizures and relieve another parent of some of the terror and panic I experienced then that would be hugely worthwhile. And I also feel that there are some lessons I have learned from this which are worth sharing and repeating.
- Always know where your phone is, especially if you are on your own with young child/ren.
- Do a first aid course. I don’t feel I covered myself in glory, and no course can prepare you for the panic you feel when it is your baby not a plastic dummy, but I did feel that somewhere in the petrified soup of my brain there were a few pieces of information on how to clear an airway and resuscitate a baby which might have been useful.
- Fight cuts and/or the insidious privatisation of the NHS with every breath in your body. The wonderful paramedics saved my sanity, the hospital staff were concerned and caring and knowledgable. The CT scan was carried out immediately with no thought of cost.
- Find a way of loving and appreciating your children and other family/friends every day, without existing under an overwhelming cloud of apprehension and fear. Alright, so I haven’t quite managed that one yet, but do let me know when you find the magic formula, I really need it.
If you think your child may be affected by RAS, then STARS are a brilliant source of information and advice – recommended by our paediatrician. Obviously it goes without saying that if you have any worries about your child, or they have had any funny turns, you should see your own doctor.