Lessons as a paediatrician-parent

A few months ago my bright, active 4 year old started to limp. As a hospital paediatrician, I ignored it and thought he was being melodramatic. After a few weeks, I decided that perhaps he had hurt himself and needed an x ray. So I duly took him to my work, and asked one of our juniors to arrange radiography, which was normal. He limped on for a couple more weeks until one day my medical family noticed that his right ankle was hot and swollen. This was intermittent, and by the time he saw another of my colleagues, it was back to normal. A couple more weeks passed, during which time the ankle was hot and swollen, and he could only hop. We were seen as a favour in orthopaedic outpatients, where the opinion was that this was most likely to be juvenile idiopathic arthritis. Within a week we had started down the arthritis road, and as a family had to start adjusting to life with a child with a chronic condition.

Magnetic resonance imaging had been arranged, and by the time the slot came round it seemed almost unnecessary because the diagnosis seemed clear. So it was to our great surprise when I was telephoned to say that our son had osteomyelitis, not arthritis, and would need surgery straight away.

Since then I have become an unwilling expert at bones, long lines, antibiotics with bony penetration, and life as a mother of a child who needs frequent hospital visits. But now that he is finally improving, I have time to reflect on my experiences as a paediatrician and a mother. And I wonder, did having a medical parent help or hinder?

Most paediatricians fall into two camps with regards to their own children: some of us are extra neurotic, needing full investigation for every last sniffle. But most of us fall into the second camp: “It’ll be better in the morning,” and “he just needs a bit of paracetamol.” There is no doubt that I took longer to acknowledge his symptoms than an average parent would have. I wish I had reacted quicker because he must have been in pain, hopping along for months.

I didn’t go through my general practitioner to get referred, so there was no one holding everything together. It’s difficult as a working parent to make time to go to the general practitioner, when it is easier to just bring your child with you to work. But as a result, when things got confusing, there was no one person coordinating. And our general practitioner was bombarded with letters that made no sense, full of contradictory diagnoses and plans.

The NHS is often a slow moving beast, with referrals between teams dictated, sent to India to be typed, approved, posted internally, and sometimes finding their way to the correct person. We were lucky to be slotted into clinics quickly, and nothing was too much trouble in terms of arranging for us to be seen. But in retrospect, maybe had we waited for the imaging before seeing the rheumatologists, the correct diagnosis would have fallen into place without the initial confusion.

Diagnostic uncertainty is something that parents have to deal with all the time. During my spell as a specialist registrar in paediatric oncology, one of the things parents spoke about eloquently was that the most difficult part was the time spent knowing that your child is seriously ill but having no idea of the details or a clear plan of action. You cannot plan, or adapt, or process what is happening. I felt this too, and it contributed to my feelings that I had to speed things up, see everyone straight away, and not sit at home waiting for imaging and answers while my child was in pain.

What have I learnt? Firstly, everyone needs to give up control eventually. I asked a colleague to be our paediatrician so she could advocate for me when things didn’t make sense or when all the consultants involved didn’t agree. Secondly, as a working parent with three kids, life is a finely tuned balancing act. And it doesn’t take much to knock things off balance. The logistics mean that you have to ask anyone and everyone for favours that you might never be able to repay.

And finally, I’ve learnt that in the end, the care you get through the NHS is good. It may take persistence and patience, but all the staff had our best interests at heart, and they went out of their way to help get us back on two (non-limping) feet.