Sally White’s Guest List: What Happens When Your Child ‘Fails to Thrive?’



Alex and his big bro Will

Ahhh the dreaded red book. Every experience I have had with it tells me there is something amiss with my boys. But what if its more than that?

Sally White (aka Wife of a Wig Wearer) talks about her experience of having a child that fails to thrive but that doesn’t yet have a medical diagnosis.

  • You HATE the Little Red Book with a passion

  • When my son was born (on the eleventh of September weighing 7.7- my own ‘disaster’ baby) two and a half years ago, he toppled out without so much as a wince. He was three pounds lighter than his brother but his little dot on the graph was there on ‘average’.

  • A tongue tie, weeks of hand expressing and a lot of heart ache later, he was down to the 9th percentile. Every two weeks I would shunt him to the health visitor clinic where we would weigh him and I would phone my mum and celebrate any weight gain or silently walk home and reflect on all the ways I had caused a weight loss in my skinnyrib babe. No one came up with a plan. No one offered any advice. I just kept on slogging. And tracking. And watching him fall down the percentiles. Fail. Fail. Fail. Fuck you, red book.

  • You’ve Waded Through the Treacle That is the NHS.

  • Getting an appointment on the NHS is akin to assembly Ikea furniture with no allen key. GP-Referral- Waiting List- Initial Appointment- Referral- Waiting List- Next step agreed- New waiting list.. I am bright, my husband is super clever, I have time and a support network and free minutes on my landline and I don’t let the public school boy wanker consultants put me off and I still find the whole system exasperating. I’ve been patronised, perved on, dismissed, and put on hold countless times.

  • I heart heart heart the NHS but it is, at times, woefully inefficient.


  • You Can’t Watch Mr Tumble. You don’t know if the problem is long-term, genetic, hormonal or even, in dark tired nights, fatal.

  • You cannot bear to watch anything about children with life-long conditions. The whole future is white noise. You can’t picture a future. Not yet.  

  • You Avoid Things. Playdates. Decisions. Google. I couldn’t face meeting up with friends who had kids the same age. Alex didn’t sit up until 25 months. He still can’t really talk at 30 months. He’s a tiddler. I watch him with his peers and want to weep. I feel an ugly sense of envy towards all the parents of healthy children.

  • But I love that other kids don’t notice his stumbly, incoherent ways: other children don’t give a fuck about differences.

  • You Often Think You’re Pregnant.

  • You wake up feeling sick. You’re packing on the pounds. You cry a lot. Then you remember that having the tightening knot of somethingsnotright anxiety is barely an aphrodisiac and, odds on, you’re not with child. You’re just filled with fear and comfort food.


  • Paperwork Ahoy. You have a family calendar that has a BBQ for you, a badminton game for husbo, a mufty day for the five year old and dermatology, audiology, speech therapy, physio and dietician for your sickly one. You’ve probably kept all those appointments in your head. You’ve organised cover at work. Your mum’s coming up for the Thursday appointment. Your husband can prob do the one at 4pm. You’ll have to take both kids to the Tuesday one. Ugh!

  • How is this your life!? Then there’s the daily slog of meds, vitamins, supplements and creams.

  • Your Kids Think Waiting Rooms Are Soft Play Centres

  • Even when you factor in the extortionate parking fees (hoard those £1 coins!), a trip up the local A&E can be quite the day out. I remember fondly watching my two children knee-deep in toys and joy in the children’s wing waiting room. Proud moment.

  • Alex pure struts through the corridors of the NNUH: this is his turf, his second home. Love/hate that.

  • You Notice Change

  • I literally kissed someone who said ‘cor, he’s grown’. I beam when he learns a new word or smacks his brother or builds a marble run. I didn’t notice the leaps and bounds and easy-coming progress that my older boy made but having Alex struggle from each milestone to the next forces me to revel in each stumbling step.

  • You Hope For and Dread a Diagnosis

  • All the years of appointments, phone calls, long sobbing gulping weeping phone calls to your mum, divisive difficult conversations with your ‘it’s all fine, don’t worry’ husband, snapping at your robust other child, awful damaging trains of thought, finally culminate in a diagnosis. An underactive thyroid. 5ml of meds each day. Done.

  • Marginal relief then bring on the RAGE that this wasn’t picked up: ‘What could I have done differently? Why wasn’t this spotted? Who is to BLAME?’. And the worst, worst, question: ‘Is that all? Is this a sign of something else? Has it done permanent damage? Can I relax now?’ Is this finally the end of my little, little boy’s medical mystery? Oh please let it be so.


    There’s nothing quite like brotherly love

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  • Reply Grace Kelly September 5, 2017 at 10:55 am

    I had a shorter experience of this after my daughter was born under weight with talipes and a missing thumb. We had to await genetic testing and then just bide our time to see how she would be… She is now three and I think we know so I cannot imagine how it feels to continue to live with such uncertainty. So brave to put it out there. Big love

    • Reply Ms O September 14, 2017 at 10:56 am

      It’s the not knowing that is so draining: I always think I can cope with most things if I’ve just got a plan. You can’t plan without a diagnosis. Hope your little girl is flourishing

  • Reply lizziemcdonnellmrst208 September 5, 2017 at 8:46 pm

    Thank you for sharing this personal journey with us all. It really is comforting for those who feel they are alone in the parent struggle. I am so pleased that your son has had a diagnosis after what sounds like an incredible battle. Wishing your family and you all the best x

    • Reply Ms O September 14, 2017 at 10:57 am

      Thank you for you kind words.x

  • Reply theidentitythieves September 10, 2017 at 9:00 am

    Sally, so sorry you’ve been going through that turmoil. Very much hoping your little Alex continues to thrive xxxx

  • Reply MummyGinelliB September 10, 2017 at 12:28 pm

    My son was born at 29+6 weeks gestation. He weighed just 1.4kg (3lb). Once he came home, after 6 weeks in the NICU, he was visited and weighed by the community nurses. Just like you, I dreaded every appointment. His weight was a constant issue, and he ended up having to be put on a high calorie formula, which resulted in him rejecting the breast. I was devastated. At one point he fell off the centiles completely. He is now 9 months (7 months corrected). He is still much smaller than he should be, but I have come to the resolve that, as long as he is healthy and is making progress, sod the bloody red book. From your pictures, Alex looks like a happy boy and you should always remind yourself that you’re doing a great job.

    • Reply Ms O September 14, 2017 at 10:58 am

      I always hated those weigh in clinics and all the chubby babies and proud parents. Ugh. Bugger the book! Let’s hope our little ones hit their teens and start growing like beans. Who cares if not though: happy healthy kind is all I want for my children. Thank you for your kindness.

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