2 March 2016

Rumer's Story, part 2

PAPP-A and meeting the obstetric consultant

Friday 20th March to Thursday 16th April 2015
12 to 16 weeks pregnant

We'd had our first midwife appointment at home just after our 11-week scan, on 20th March. It had been fairly standard, with no concerns. I'd asked about whooping cough vaccine and the midwife Mollie had promised me a leaflet. I'd also admitted to some anxiety about how things were going and Mollie assured us that 'everything would be okay'. After the nuchal scan showed the low PAPP-A, my anxiety had triggered me into frantic googling and I'd discovered that low PAPP-A (exactly what was considered to be low varied) was associated with poor fetal growth. I'd also been doing a course on customised growth charts at work which happened to mention that low PAPP-A was linked to a seven-fold increase in the risk of stillbirth.

Of course my googling on low PAPP-A also led me to discover that it was associated with an increased risk of trisomies 18 and 13, but I dismissed this instantly: the nuchal measurement had been so good and the risk so low for both that I wasn't worried. However, I was worried about the possibility of stillbirth and growth restriction. At my booking appointment, Mollie had booked me a appointment with one of the consultant obstetricians, Jody Ellis, as I had PCOS and was therefore requesting diabetes testing. I decided to contact Mollie with my concerns and request that the consultant appointment was moved forward.

Mollie responded quickly by text. She'd emailed another consultant, Mr Conroy, and he advised starting low-dose aspirin at 75mg once daily until 37 weeks and having uterine artery dopplers at the anomaly scan to look at blood flow through the placenta. Mollie also moved the consultant appointment forward, and on 16th April, we went to see Ms Ellis at our local clinic.

The consultant clinic was surprisingly quiet. I don't know if we got lucky, but I'd thought I might be late, having got coffee, and met Chris in the waiting room after he'd been to work. I hadn't worried as I knew how late doctors clinics tend to run, but of course we didn't get to drink the coffee before we were called in. We ended up seeing Ms Ellis' junior doctor. We explained our point of view on low PAPP-A, backed up by research, which was that we needed serial scans and dopplers to monitor for growth restriction and reduce the risk of stillbirth, as per NHS England draft guidanceRCOG guidance and the Perinatal Institute GAP protocol. We asked for 3 weekly scans. The junior doctor was lovely and quite responsive. She said she'd have to ask Ms Ellis, but appeared to agree that we had a point regarding scans and also that I should have diabetes testing - even though under the hospital policy I was not eligible until I'd had a high random blood sugar, whereas NICE guidance would suggest that with a family history of Type 2 diabetes and PCOS I should have a glucose tolerance test as standard.

The junior doctor left the room to consult with Ms Ellis while we waited. She came back and said she was unable to speak to Ms Ellis who was on the phone; she then started to fill in a scan request form for 3-weekly scans. Ms Ellis then came in and she tucked the scan request form under another piece of paper. Our discussion with Jody Ellis did not go terribly well, she suggested that there was no reason for us to have extra scans, that the hospital policy was different than national guidance because of 'their population' (the hospital is situated in a borough with an extremely high rate of stillbirth) and that if we wanted these scans we could get them privately. In the end she said that she would contact the fetal medicine specialist doctor, George Donnachie, via email. We asked if perhaps it wouldn't be better for us to see Dr Donnachie to discuss and she eventually agreed to make the appointment. We left the meeting not feeling particularly positive. After we got home, Grace, one of the midwives from the Dale team, called and asked how the appointment went. I remember that we expressed that we wanted to change consultants. Possibly that was the start of us becoming difficult.

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