She is sixteen months old. She loves her rabbit snuggie – Bunny Wiggles – strawberries, row-row-row-your-boat, throwing toys out of the bath, telephones and shoes. She is the firstborn daughter and the oldest of the girl-twins but the smallest of the four; she wields her tiny stature like a weapon. She is her mama’s girl, her sister’s best friend, the boys’ most precious sibling. Embla is the height of a nine-month-old, weighs the same as the average twelve-month-old, she is tiny and loud and the child is so, so loved.
It started with a wound in her mouth. I was in the office when Kirsty sent me the photo; it was black and cavernous, like nothing I had seen before. The doctor’s surgery offered us a 5pm appointment that evening, and my boss kindly allowed me to leave early to take the baby to her appointment. She laughed and chattered nonsense on the bus, held my hand around the supermarket, we bought strawberries to snack on in the waiting room. And I remember feeling sheepish because my baby with a facial injury could eat, was laughing, it surely wasn’t so serious as to waste the doctor’s time.
But there was the bruising. By the time that I had made it home from the office, the bruises were coming out on her face. We rationalised that she had fallen and hit her head, bruising her face and biting the inside of her cheek. I remember that the GP was visibly shocked to see the bruise on her face. He asked me to undress her and there were more bruises, mottling her ankles and dotting up her legs, a fingerprint trail down her spine. He called in a colleague, another doctor whom I have known since adolescence. They started to count them, reaching ten and then twenty, and the first doctor paused.
There were bruises we hadn’t seen the first time round. They were multiplying.
That’s when the ambulance was called.
I just remember feeling utterly shocked at this point. Because my baby was fine, she was fine. Bright and cheerful, playing ‘boo’ around the door and stuffing her chops with a punnet of strawberries. One of the GPs made me a cup of tea and I let her, not because I wanted a cup of tea but because she seemed so desperate to do something for me, to give me something. It was very dark and sweetened with sugar. It was three-quarters full when the ambulance arrived.
[I hope that you’ll forgive me for taking photos. Having something to focus on that wasn’t my seriously unwell baby kept me sane in the intervals where she was sleeping, or there were no doctors or nurses rushing to impart information. And photography always helps me to process. ‘It happened this way, and it was like this.‘ You know?]
At first they suspected sepsis, but she didn’t behave like a septic baby. Her chest rattled a little from a cold that she’d borne for weeks, but she was fine. We read books in the playroom, and she pushed about a trolley filled with plastic fruit. She flirted with the nurses, offering her bunny comforter and howling when it was touched.
The bruising was getting worse.
Preliminary blood tests revealed ‘extremely low’ platelets. She wasn’t clotting.
We braced ourselves for an inpatient stay whilst the doctors began more testing to find out why.
Alongside the bruising on her body, she began to develop blisters in her mouth. The inside of her cheeks and the tip of her tongue turned black, and she dribbled blood constantly. On the first night, I decided to let her sleep with me; she woke up at 2am and, overwhelmed with delight to find a mummy in her bed, began to smother me in kisses. It was revolting, like being assaulted by a steak. She spent the rest of that night and the following in the cot!
I still feel sick when I remember changing her nappy and finding blood. That rocked me.
Sleep on the first night of our stay was restless and uneasy; punctuated by alarms from other patients, routine observations, the baby’s own wakefulness. I dreamt of trouble at work; failed meetings and missed travel. But I awoke to the news that my baby did not have leukaemia, and that started the day better than any cup of coffee could.
My child’s diagnosis was idiopathic thrombocytopenic purpura; a little cold had triggered an overreaction of her immune system, causing her antibodies to go a bit bonkers and munch her platelets. Platelets help blood to clot, and in the absence of them she was bleeding internally.
Our local hospital doesn’t have a paediatric haematologist so we were looked after by the paediatric haematologist in one of the bigger hospitals close by. They opted not to treat the bleeding but rather to keep her under observation until it lessened. We stayed for three days, during which the doctors counted the bruising every morning and I tried to keep the baby quiet and calm; ITP doesn’t tend to kill, but when it does, it’s usually due to a brain bleed.
The playroom kept us sane and I was tickled when Sian, the Play Specialist, introduced herself to me as a long-time reader of the blog. It always happens when I’m wearing something unbecoming or behaving like a muppet (in this instance I was wearing yesterday’s clothes and watching, helplessly, as my baby writhed across the floor). Hello Sian! Thank you for advocating for us when I was a mess, and thank you for your incredible playroom full of toys, which kept Embla and her siblings so happy and quiet.
Of course I knew that the most important thing was to have my baby well again, and we were so relieved that she was not more seriously ill, but to go home in time for Christmas felt like such a gift. After all of the stress about buying what for whom, plans on the day and work deadlines, all that really mattered was that we would all be together – and we were.
Our blood runs cold every time she bruises, as ITP has a 20% recurrence rate, but for now, she is starting to heal and everything seems just fine.
And my baby came home for Christmas.