Type 1 diabetes - given my time again: Victoria’s story

AIMS Journal, 2024, Vol 36, No 2

By Victoria Rixon

In 2019, at 26 weeks pregnant, I was admitted to hospital with sickness, headache, raised blood pressure and glucosuria (glucose in the urine). I was placed on fluids, sent to a bay on the antenatal ward and booked for a glucose tolerance test in two days time.

As a qualified midwife of two years, the ward was familiar to me. I settled in, being cared for by my amazing colleagues. I was brought flowers, treats and cards encouraging a speedy recovery.

My denial of, and inexperience in, diabetes made it hard to accept what was soon to become the most traumatic experience of my life. My other pregnancies and births, including a home birth in 2011, had been so empowering. I had always felt heard and supported and these positive experiences were the reason why I eventually became a midwife. However, I was now acutely aware that I was a high risk patient and was being robbed of all the freedom I’d previously had. Quite frankly I was petrified.

With very little family support around me I attended my first consultant appointment alone. I can still remember what I wore, how I felt and who was there. Etched into my mind, it was an event that will stay with me forever.

My obstetrician, an endocrinologist, two diabetes midwives, three junior doctors and a student nurse, all came to the ‘show’. They had never come across someone like me before, they wanted a piece of the action for their portfolios, to talk about in an essay perhaps. One vital piece was missing however - my consent and my voice as I sat there frozen in fear. Then I heard the words, “you have type one diabetes”. I believe I said, “not me surely?” A fit, young, healthy mum of three, running frequently and with a normal BMI; they must have the bloods mixed up with some poor other diabetic.

I can’t remember much thereafter, but I know they checked my finger nails and skin and whispered between each other. I was a puppet, in their exciting show, not a vulnerable pregnant woman. They failed to understand I was no longer there in the capacity of a professional midwife. The only word I remember taking home from this appointment… stillbirth.

I was sent home on oral medication, as I refused insulin. Insulin was for the really sick people not me, or so my understanding and education led me to believe. A few days later I became symptomatic of hyperglycaemia and I admitted it; they were right and I was wrong. I needed insulin after all. I was back at work by then and, during a shift on the labour ward caring for a patient in labour, the diabetes nurse sat me down in my scrubs, gave me a brief explanation and showed me how to set up my insulin pen and how to administer the dose, and then off she went.

I can’t recall much between then and around 36 weeks. I slipped into some strange blur, having daily glucose highs and lows, worrying that if I didn’t keep my numbers normal my baby was going to die. I did all they asked, “don’t eat this, don’t eat that, exercise daily, don’t eat bread, cut down on carbs, but enjoy your pregnancy, don’t panic, but call us if your numbers go over 7.5 more than 3 times”. That was daily for me. What I know now is that it is common for people with type one diabetes to have a wider range of levels throughout the day but you are made to feel a bad person for that happening. I didn’t attach to my baby, in fact I knew he was going to die so why bother. I developed hypo anxiety,¹ not leaving the house or driving, or walking the dog even. I was a broken, sad, pathetic mess and no one, not even my team, nor my employer seemed to notice or care.

I was told I wouldn’t be allowed to go past 37 weeks as per NICE guidelines.² At 33 weeks my obstetrician informed me I now had type 2 diabetes. The test for antibodies was negative and I would now need to wait for induction until 38 weeks. To be told I had another week trying to keep my baby alive simply destroyed me beyond words. Fast forward to my 36 week appointment and my obstetrician informs me that I am now a gestational diabetic and won’t be induced until 39 weeks, and that I would not require insulin following delivery. I have never had a panic attack previously but, on reflection, I had one that day. My baby wasn’t coming out alive, I simply couldn’t cope for three more weeks like this. Forgetting all I do for other women - empowering them to feel safe, loved and supported, the very essence of being a strong woman able to birth babies - all of that had long gone from my mind.

I took a second opinion, I demanded an induction at 37 weeks. I got it; induction of labour for anxiety. I feel angry when I look back at that even now. Wouldn’t you? I had detached myself from associating with being pregnant, self preservation and protection from what I knew was coming, either I was going to die, he was going to die or we both were.

My induction was absolutely horrific, hyper-stimulating on the propess,³ so many vaginal examinations that I was red raw and screaming, my husband crying in fear that I was genuinely dying. I was taken to the labour ward, the artificial rupture of membranes helped soothe the hormones, and my smallest baby at 6lb 14oz was born … ALIVE!

The morning I delivered, my obstetrician was on shift. As I had taken a second opinion against her advice she made derogatory comments about me to colleagues that were later fed back to me. I let her know what I thought, felt and hoped would be different for others.

I was sent home, with no insulin, but a live baby. That oxytocin bubble is incredible and I felt on top of the world. I was relieved I could leave this all behind and begin to rebuild my life. Months later I was diagnosed with type one diabetes and the journey since then, now five years, has not been easy. Given my time again, I would have had my home birth, even as a diabetic, as I believed somewhere that all was going to be fine. But sadly I allowed myself to be lost in the world of doctors' opinions and their ‘evidence’ and lost complete control of mine.

I am no longer a midwife, I suffered trauma as a result of my pregnancy, and disability discrimination, and have stepped away completely and de-registered from the NMC.

Author Bio: Victoria Rixon is an ex-NHS midwife with type 1 diabetes. Founder of the With Woman Movement, she is striving for change and safer maternity.