1 Support Chain: Pregnancy Institute USA Innermost Secrets UK Fetal Medicine Foundation UK University of Nottingham UK Monica UK Mission The Pyramid of change group was created by bereaved parents for parents, families, and healthcare professionals aimed at improving knowledge on the prevention of stillbirth, by improving antenatal care and enhancing the critical importance of fetal screening in 3 rd trimester. We are a non for profit group concerned about the high number of preventable stillbirths that occur every year in the UK and worldwide. We are working together with healthcare professionals, professional organisations to commence action and raise awareness that may prevent late term stillbirths. 2 Inspired The work of Dr Jason Collins, Prof. Ian Donald, Prof. Kypros Nicolaides, Prof. Stuart Campbell brought me to this meeting. Dr Nicolaides technological approach in saving life in the womb is in one word Incredible. After researching Stillbirth we would like to know why many full term healthy babies are lost every day between 36>41+ GA. We did asked GOD WHY No Reply so God guided us to search excellent medical professionals in fetal medicine, Professor Sir Sabaratnum Arulkumaran RCOG? 3 The following presentation references: 1.Human Rights. 2.Mums Stories. 3.W.H.O 4.NHS Bristol Royal Infirmary. 4A SPMMR. 5.UCA Royal Colleges. 5B Pathways to maternity care. 6.Int. Research, NHS Litigation, GA & Stillbirth Location. 7.Nuchal Cord Harmless/Harmful, 7A Smellie Type B NC. 8.8,8A, 8B,8C Ultrasound Detection of UCA, 8D NC UK Abstract. 9.NST/CTG Baby Amalia, 9A Ultrasound Research, 9B Common Sense Patient & Fetal Safety. 8C CEMACH 10.The Pyramid. 11.Summary. 4 1.3 Convention rights The need for greater autonomy for patients was a particular concern in the report which emphasises the need to keep patients informed in a variety of ways at different stages in the treatment process, and the need to reinforce the information over time. It recommends putting patients at the centre of the NHS and giving them adequate time to ask questions and seek clarification about their treatment. In the treatment of children, the report recommends that parents should be recognised as experts in the care of their own children and should be fully involved in that care. 1. The human rights Act 2. Mums Stories Barbara Mane - reported reduced movements, frequent daily hiccups. Pre pregnancy BP averaged 100/70, during pregnancy 150/88 Pulse 124, book in BMI 28, term BMI wks deceleration missed, 36wks X2 Nuchal Cord ignored, at delivery midwife noted x2 NC very tight. Clinical stats indicate pre enclampisa. Baby Amalia was a perfectly healthy baby. Linda Doran - My son born in 2003 (thankfully safely) had a true knot in his cord, and I was told not to mention this again when I queried this with midwife and nurses. During my pregnancy in 2006 I always asked at ultrasounds can you see the cord and was told NO. I had a 3D scan(non medical) at 26 weeks and asked can you detect any abnormalities in the cord and they said NO, Dr. Collins reviewed this scan for me after we lost Tara and he seen the nuchal cord. I experienced a lot of baby hiccups especially at night but was told that this was normal I awoke on 15/9/2006 Tara's due date and felt very little movement, contacted GP who referred me to Maternity hospital where they confirmed by ultrasound our baby had died. Baby Tara was born on the 17/9/2006 at am weighing 7lb 6oz. Baby Tara was perfect in every way. Karen Holmes - reported reduced movements, advised that baby had less room to move in late pregnancy and as long as getting 10 movements a day everything was fine. Blood pressure averaged 100/55. Karens baby son Caelan was Stillborn Nothing was found to be wrong with placenta or bloods. Baby Caelan also quivered on a couple of occasions prior to his death and had frequent hiccups generally in the evening. The midwife who delivered Caelan advised his cord was very tight around his neck and short. Baby Caelan was perfectly healthy baby. 6 3. W.H.O Managing Complications in Pregnancy and Childbirth A guide for midwives and doctors FETAL DEATH Intrauterine death may be the result of fetal growth restriction, fetal infection, cord accident, congenital anomalies, antepartum haemorrhage and "pre- eclampsia" W.H.O, were shockingly wrong to recommend 10 > 15% CS rate, Drs can now treat the patient and not the target. 7 4. NHS Bristol Royal Infirmary Bristol Royal Infirmary enquiry into cardiac deaths. Keeping patients informed about treatment and care. Information should be tailored to the needs, circumstances and wishes of the individual. Information should be based on the current available evidence and include a summary of the evidence and data, in a form which is comprehensible to patients. The public should receive guidance on those sources of information about health and healthcare on the Internet which are reliable and of good quality: a kite marking system should be developed 8 4A. SPIMMR Scottish Perinatal Infant Mortality Morbidity Report KCND Perinatal Mortality Increase /1,000 9 5. RGOG/RCM Umbilical Cord Accidents Letter Statement Professor Sir Sabaratnum Arulkumaran - Professor Cathy Warwick - UK Registration & classification: On the issue of a standardised UK infant death registration & classification system the RCM and RCOG work in collaboration with other Colleges and agencies in reviewing current policies and practices. The issue you have raised has been discussed in several fora including update meetings with the Chief Medical Officer, who has been committed to the topic. Late Term Scans: You also ask the RCOG if it is not routine practice to do ultrasound in the third trimester? The RCOG has explained that they might unnecessarily intervene in 20% or more of the cases for fear of possible cord accidents in labour. The sensible approach is for careful monitoring by auscultation (Hand Doppler) or electronic fetal monitoring in labour to identify an abnormal fetal heart rate and then to act accordingly. To this effect the two Colleges are working with the NHS to develop an e-learning package on intrapartum fetal monitoring. Parents Response: EFM now not commonly used during L&D, clearly this approach only leads to fire fighting which proper screening could prevent. (informed choice = planned delivery reduces RISKS) Time of birth must also be considered when maternity ward emergencies occur. Research clearly highlights GA 36 > 40 is when largest % of stillbirth occurs prior too and just before the onset of labour. 10 1.There is no evidence to support admission CTG in healthy women with no complications. POC Low Risk Group have higher rate of Term stillbirth. 2.Fetal heart rate bpm clear and regular on auscultation. 3.Intermittent auscultation for 1 minute every 15 minutes after a contraction. 4.Be aware of a rising or changing baseline as an indicator of potential fetal compromise. 5B. NHS Scotland KCND pathways to maternity care NHSQIS st Stage Fetal Monitoring on hospital admission 11 6. International Research Global Stillbirth Research indicates Stillbirth is more common in low risk, educated and working class mothers, normally text book pregnancies. Scotland UK - Keeping Childbirth Natural Dynamic (KCND) midwife control introduced in Scotland is completely the wrong approach to antenatal care in 2010 absolutely un professional to categorise pregnancy as low or high risk. Obesity & BMI, KCND control does not measure mums weight/BMI during pregnancy. Taiwan J Obstet Gynecol March 2009 Vol 48 No 1 Dr Junichi Hasegawa, Department of Obstetrics and Gynaecology, Showa University School of Medicine. Japan low infant mortality: Conclusion: Antenatal ultrasound diagnosis of umbilical cord abnormalities may be helpful in picking up cases in which strict fetal monitoring is warranted antenatally as well as during labor. This information could then be used to triage patients to either high-risk or low-risk cases and could alert the physician to the increased risk of non-reassuring fetal status. In cases with cord abnormalities, especially VCIs and HCCs, intensive monitoring and preparation for cesarean delivery are indicated. We do believe that the neonatal outcome must be improved by these precise managements. The NST has been shown by Cochrane Reviews to be a reliable method to evaluate the fetus. Detection of fetal heart rate changes on a Non Stress Test requires fetal investigation 12 6. Stillbirth Gestational Age Trend NHS litigation Napier House London UK 13 6. Stillbirth Location NHS litigation Napier House London UK 14 7. Nuchal Cord Harmless: Absence of signs of fetal distress normally would have no delivery. Harmful: NC Type A & B. NC associated with relatively poorer prognosis regardless the number of loops including fetal distress and fetal demise. Harmful NC - A cause fetal distress, meconioum and neurological damage CP. Harmful NC - can lead to emergency intervention which only increases risks to mother and baby. NC Type B (Locked) is associated with E/CS & stillbirth NC with decreased fetal movements is considered high risk. Baby size & weight should be considered with NC. 15 7A. Prof. Smellies - Type B NC 16 8. Amalia 22Wks Anomaly Scan At time late 2007 Not Routine. Barbara was not welcomed & felt uncomfortable by NHS Obstetrical staff. NC was Present during this scan No Doppler Scan performed. Dr. has a view that NC is not a risk - Parents not informed of NC. 17 7A. Amalia 24Wks - Private Gender Scan Amalia making good progress. This Scan was seen by NHS Midwife. 18 8B. 28 th Sept.2007 Amalia 36Wks - private presentation scan Sonographer advised & concerned NC present, report & photos issued for NHS OB review same day, when switched to 4D the NC was very clearly around her neck. NHS staff ignored this professional scan. 19 8C. FACT - Nuchal Cord Compression can lead to neurological damage or death (FACT THAT WE NOW KNOW) 20 8D. SS Das a1, SC Saha a2 and RB Beattie a3c1 Department of Obstetrics and Gynaecology, Neath General Hospital. Department of Obstetrics and Gynaecology, University Hospital Cardiff. Department of Fetal Medicine, University Hospital of Wales, Cardiff.c1 Abstract Approximately 1 in 4 of all babies are born with cord round the neck. Being such a common obstetric condition, there is a view that nuchal cord ordinarily does no harm. A number of studies have recognised cord round the fetal neck as a significant cause of fetal death in utero and perinatal morbidity. However, many obstetricians have different views about the significance of nuchal cord as a cause of perinatal morbidity and mortality. POC, evidently their is lack of umbilical cord pathology knowledge in the UK. 21 9. 18 th Sept 2007 Amalia 34Wks A Trend is starting to develop Now experiencing frequent fetal hiccups Midwives advised. Barbara reported lack of fetal movement NST shows FHR deceleration Midwife reports everything normal, at this stage No OB professional reviewed the files, BP starting to rise - Deceleration confirmed By RCOG Dr Joe Davis. 22 9A. EJOG Volume 123, Issue 2, Pages (1 December 2005) E. Assimakopoulosa, M. Zafrakasa, P. Garmirisb, D.G. Goulisa, A.P. Athanasiadisa, K. Dragoumisa, J. BontisaVolume 123Issue 2 E. AssimakopoulosaM. ZafrakasaP. GarmirisbD.G. Goulisa A.P. AthanasiadisaK. DragoumisaJ. Bontisa Nuchal cord detected by ultrasound at term is associated with mode of delivery and perinatal outcome Study design - Prospective study with 352 normal, singleton pregnancies, with fetuses in the vertex presentation, examined with real-time ultrasound at 3739 weeks. Health care workers at labour and delivery blinded to previous detection of nuchal cord. Baby Amalias Obstetrician well informed & Ignored WHY Conclusions - Nuchal cord in normal pregnancies at term is associated with increased rate of operative vaginal and caesarean delivery in nulliparae. The presence of a nuchal cord results in slightly lower Apgar scores at 1 and 5min, mainly as a consequence of higher operative delivery rates. 23 9B. Common Sense Patient & Fetal Safety 1 st trimester parents will be informed of the risk of miscarriage and how to manage your pregnancy. 2 nd trimester Scans and check ups. 3 rd trimester check ups but no advice on how to prevent stillbirth and what to look out for, no late term scans, no regular NST in the last 6 weeks of pregnancy yet in other countries yes.. WHY.. Anxiety is no excuse to avoid this educational question. Pregnant women should be allowed to decide if or not they want to be informed on how to prevent term stillbirth. LETS ASK and the survey says YES women want and have the legal right to protect and prevent the loss of their unborn child. 24 9C. CEMACH >41wk GA, data indicates clinicians must be extra cautious during 3 rd trimester, many stillbirths are indeed preventable by possible means of controlled induction or CS delivery, once again parents must be allowed to make an informed decision. If not how then do we truly measure the effectiveness of today's 2010 Antenatal Care. Potentially Viable babies = 2134 = 57% improved 3 rd trimester screening could save many of these babies,example weekly NST Many stillbirths after 32 weeks are not avoidable, for example, congenital abnormalities, abruptio placenta and utero-placental insufficiency. Their is now no need for Babies to go past their due date as confirmed by Ultrasound research, overdue babies enter a higher risk with no additional UK antenatal care managementWHY 25 10. 26 Baby Amalia Nicole Devine Born Asleep 21st Oct 2007 A perfectly healthy baby with a disadvantage Nuchal Cord x 2 which was ignored by NHS Lanarkshire. Scotland UK Independent investigation concluded Inadequate Care Baby Amalia Baby Tara 27 11. Summary. 1.Urgent need to improve infant death Classification. 2.Research suggest an increase in cases were clinical staff failed to listen. 3.Urgent need to improved 3 rd trimester screening with proposal to incorporate weekly NST CTG in last 6 wks of term. 4.RCOG/RCM urgently need to incorporate umbilical cord pathology education. 5.Research indicates the need for stillbirth prevention. 6.Financial saving a as direct result in preventing stillbirth & CP. 7.An end to categorising pregnancy low & high risk KCND FACT all pregnancy carry the risk of stillbirth & neurological damage. 28 Warmest of thanks to Dr John Grant, Dr Jason H Collins, Dr Bryan Beattie, Dr Margret McDonald. A Special Note of thanks to Professor Sir Sabaratnum Arulkumaran for his attention & allowing Pyramid of change present to RCOG UK. A message of Hope from all the parents & families who have supported Pyramid of change. The loss of an infant is immeasurable Please Help Try & Reduce STILLBIRTH. Prepared & Presented by Robert Devine on behalf of Pyramid of Change supporters and our children. 29