The Patients Perspective

1. The Patients Perspective A Presentation to RCOG/ENTER 26th April 2007

2. First Child • Michael, b.11-09-90 • 42 wks Gestation • Birth weight 3.03Kg • Length 49cm • Asphyxia during birth • 2 weeks in SCBU • Some developmental delay

3. Second Pregnancy • Pregnancy confirmed 6 months after delivery of first child • ‘Shared care’ between GP & Consultant • Planned induction at 41 weeks • Careful monitoring during labour due to Michael’s asphyxia

4. Second Pregnancy • Pregnancy very different (Mum’s view) • Got much bigger much quicker • Very uncomfortable for last 6 weeks – difficulty walking and personal care • “Are you having twins?” • GP expresses concern at size of baby

5. Appointment with Consultant • Second appointment, at term • Reviews previous labour • Routine checks reveal elevated BP and protein +++in urine • Decision to induce next day “as baby is clearly big enough”

6. During Consultation • I express concern – “I am terrified of delivering this baby, it feels so much bigger than the last one” • Consultant replies “You’ll be fine, you’ve delivered once and tall girls don’t need Caesarean sections” • He adds “Given your last baby’s condition at birth though, we will monitor this baby carefully” • I remained worried.

7. D-Day! (part one) • Admitted on Wednesday afternoon for induction • Planned bed rest due to elevated BP • But not informed by staff – spent afternoon walking round! • 12:30am Thursday morning induction commences with pessaries • Mild contractions during rest of the night

8. D-Day! (part two) • Thursday morning have shower & breakfast • Told off by HCA for being out of bed when I should be on bed rest • Assessed by midwife at 12:00 noon • Sent down to labour suite for monitoring & delivery

9. Nearly There… • 4:00pm waters broken, labour proceeds normally • I was constantly worried about baby’s heart rate on the monitor • Decelerations at 8:40pm, Doctor asked to review labour & CT trace • 9:15pm examined by Doctor, found to be fully dilated. Encouraged to push to ensure short 2nd stage labour as BP 160/104

10. Just A Little Longer… • 9:18 – baby’s heart rate drops to 50-60 bpm • 9:25 - I become very stressed at this – my BP now 180 systolic • 9:30 – Baby’s heart rate falls to 60 bpm recovers to only 90 bpm – Midwife recognises signs of hypoxia & performs episiotomy

11. Almost There… • 9:31 – Dad encourages, saying “His head keeps coming down, not long now” • But head retracted after contractions! • Deliver forehead & baby gets stuck • Push again – nose appears & gets stuck • Push again – chin delivered at last! • Told to push again – but NO MORE CONTRACTIONS!

12. Delivery At Last! • I try to push but no more contractions • Midwife pulls on baby’s head twice to no effect, presses panic button • More staff appear – now 5 in room • 9:37 – ‘crash’ call for Paediatrician • I was turned onto my left side • 9:40 - Two further pulls deliver baby’s shoulders. Notes record ‘delivery of baby with true shoulder dystocia’

13. Panic Stations! • Lots of staff but no-one explained anything to me about what was happening • I was terrified & convinced baby was dead • Pre-flight safety check!

14. Post Delivery • Baby taken away for resuscitation • Gavin weighs 4.910Kg • Length 58cm • Father told “Got a bit of a palsy – will get better in 6 weeks or so” • I go to theatre for surgical repair under GA • Gavin admitted to SCBU at 6 hours old due to breathing difficulties

15. Coming Home • Gavin leaves hospital aged 10 days • Physiotherapy every nappy change • Appointments with – • Physiotherapist • Orthopaedic Surgeon • Paediatrician • Ophthalmologist • Dietician • Surgeries at 6 months, 2 years and 10 years

16. Effects On The Family • Shock for extended family • Dependency on grandmother for appointments (driving) • Financial loss – time off work, petrol, car parking etc • Lack of quality time to spend with older child • Stress of explaining injury to others

17. Effects On Parents • Mother has difficulty bonding with baby – guilt / failure / therapist, not parent • Father suffers PTSD & clinical depression from delivery – medical discharge from Fire Service as result • Family now financially unstable • Mother feels lack of support from Father- feels lonely and isolated • Mother unable to return to work due to appointment and therapy commitments

18. What Would Have Helped? • Knowing someone else who had a child with the condition • Accurate information about the condition and referral to a specialist treatment centre • A Support Group ! • A de-brief after delivery to discuss what happened • Counselling ( we are still waiting to hear from the Hospital social worker to whom a referral was made!)

19. Where Are We Now? • Gavin is a happy 15 year old boy • Has some limitations in function and mobility of his arm • Legal case completed after 11 years – his future is a little more secure. • Mum works with other parents In The Erb’s Palsy Group to support and help other families through the experience. • Dad works as a Development Officer with Community Groups in the Voluntary Sector following re-training • We are celebrating 25 years of Marriage this year (note I didn’t say HAPPY years!)

20. What Gavin Can’t Do • Hand to neck • Hand on spine • Reach his left shoulder • Reach up to the front • Arms are different lengths

21. What Gavin Can’t Do • Supination • Abduction

22. What Gavin Can’t Do

23. Erb’s Palsy Group For information about the Erb’s Palsy Group write to: The Erb’s Palsy Group 60 Anchorway Road Coventry CV3 6JJ Or visit the web site: www.erbspalsygroup.co.uk