The Patients Perspective

A Presentation to

RCOG/ENTER

26th April 2007

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

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

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

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”

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.

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

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

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

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

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!

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’

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!

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

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

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

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

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!)

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!)

What Gavin Can’t Do

• Hand to neck

• Hand on spine

• Reach his left shoulder

• Reach up to the front

• Arms are different lengths

What Gavin Can’t Do

• Supination

• Abduction

What Gavin Can’t Do

Erb’s Palsy Group

For information about the Erb’s Palsy Group write to:

The Erb’s Palsy Group60 Anchorway RoadCoventry CV3 6JJ

Or visit the web site:

www.erbspalsygroup.co.uk