Stillbirth Research and Education Submission

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Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

INTRODUCTION

Thank you for the opportunity to contribute to the future of stillbirth research and education in Australia. This is an individual submission based on my and my husband’s experience of stillbirth. Our daughter, Clementine, was stillborn in 2013.

In the first part of the submission, I will share our experience to give you background and context.

In the second part of the submission, I will address Terms of Reference (e) and (f).

OUR EXPERIENCE

In July 2013, two weeks before her due date, our daughter, Clementine, was stillborn. We requested an autopsy for our daughter. The autopsy results were inconclusive.

However, based on the information we do have, I believe the doctors responsible for managing my pregnancy failed to follow guidelines on screening and diagnosing vasa praevia.

Vasa praevia occurs when the umbilical vessels cross the membranes of the lower uterine segment above the cervix. Unsupported by either the umbilical cord or placental tissue, these vessels are at risk of rupturing at the time of membrane rupture, with the subsequent bleeding of fetal origin. Immediate caesarean section is necessary to minimise perinatal morbidity and mortality which is extremely high in the setting of ruptured vasa praevia1.

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) published a statement on vasa praevia in July 2012 and updated it in 2016. The statement that was current during my pregnancy was the statement as of July 2012. This statement contains evidence- based guidelines on screening for vasa praevia. My belief is that these guidelines were not followed by the doctors responsible for my pregnancy.

I believe that the failure to follow RANZCOG’s guidelines on vasa praevia may have contributed to the stillbirth of our child.

First trimester ultrasound

The first trimester combined screening indicated an increased risk (1 in 168) of Trisomy 21 (Down syndrome).

The report records a PAPP-A result of less than 0.3 MoM and the report highlights that this result is associated with an increased risk of poor pregnancy outcome and cites examples of poor pregnancy outcome as preterm birth and IUGR. A low PAPP-A result is associated with a greater risk of stillbirth2 but this was not included in the report or discussed with me.

Further information on the outcomes associated with a low PAPP-A result was not forthcoming. My impression was that definitive research on the causes and outcomes of low PAPP-A did not exist.

Following the combined screening, I met with a genetic counsellor and she gave me information on diagnostic testing. The focus of the discussion with the genetic counsellor was on the risk of Down syndrome. The risk of stillbirth was not discussed.

1 RANZCOG, College Statement on Vasa Praevia (C-Obs 47) 2 https://www.medpagetoday.com/obgyn/pregnancy/193

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

19 week ultrasound

The 19 week ultrasound report notes that that a single umbilical artery (SUA) was present. SUA is associated with an increased perinatal mortality rate of 22 per cent because of the association with congenital malformations3. This was not discussed with me.

The 19 week ultrasound report also states that “the placenta is anterior low” and also that “the anterior placenta is no longer low lying – it is 20mm from the internal os”. The report appears to contradict itself on whether the placenta is low lying. My understanding is that a placenta that is 20mm from the internal os is a low lying placenta. This was not discussed with me or followed up at any stage.

Failure to follow guidelines on screening and diagnosing vasa praevia

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) has published a statement on vasa praevia. The statement that would have been current at the time I was pregnant was the July 2012 version (I have included this as a separate attachment).

This statement reads:

While universal screening with transvaginal ultrasound for vasa praevia has not been shown to be cost effective, targeted screening for vasa praevia has been shown to be cost effective. This includes: . The use of colour Doppler at all routine ultrasound examinations of singleton pregnancies to identify the placental cord insertion (i.e. exclude velamentous insertion)

Velamentous cord insertion is a known vasa praevia risk factor.

My 19 week ultrasound report makes no mention of a check or an attempted check of placental cord insertion to exclude or diagnose velamentous insertion.

The histopathology report on my placenta indicated that there was a velamentous cord insertion. The velamentous cord insertion was not identified at any point during my pregnancy.

The statement goes on to recommend:

. Targeted ultrasound examination of the lower uterine segment and cervical region using colour Doppler (with appropriate low flow settings) in all pregnancies with risk factors for vasa praevia; i.e. o Low lying placenta/ placenta praevia: Review of placental site in later pregnancy in a patient with known low lying placenta should routinely prompt examination to exclude vasa praevia; o Bilobed placenta or succenturiate lobe; o Velamentous cord insertion; o Screening all multiple pregnancies; and o IVF pregnancies. (Bold added by me)

3 https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/perinatal-reproductive/neonatal- ehandbook/congenital-abnormalities/single-umbilical-artery

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

I had two risk factors for vasa praevia (low lying placenta and velamentous cord insertion). The low lying placenta was identified at the 19 week ultrasound. The velamentous cord insertion was not checked via ultrasound and was only identified in the histopathology report on my placenta.

There is no record of a targeted ultrasound examination of the lower uterine segment using colour Doppler (as per the statement) to attempt to exclude or diagnose vasa praevia. Amniocentesis

An amniocentesis test conducted at approximately 23 weeks revealed that our baby had a mosaic form of Turner syndrome. Between 12% - 25% of her cells had one X chromosome, and the remainder of her cells had two X chromosomes. In an affected individual, Turner syndrome occurs as a random event during cell division in early fetal development. Turner syndrome is variable and, when diagnosed in utero, there is no way to predict exactly how it will affect the individual. Clementine may have had no obvious signs or symptoms of Turner syndrome, there may have been mild signs of Turner syndrome or there may have been classical signs of Turner syndrome (e.g. short stature, webbing of the neck, infertility).

A report from a genetics service indicated that this result provided no explanation for the ultrasound finding that my baby was small for her gestational age. The doctors responsible for my care seemed to have varied opinions on this with one believing the Turner syndrome diagnosis did explain her restricted growth and another believing it did not.

Growth scans

Growth scans were performed at 23 weeks, 25 weeks, 28 weeks, 31 weeks, 33 weeks + 6, 36 weeks + 2.

At the 23-week growth scan, most measurements fell below the 5th percentile. The pregnancy was flagged as high risk and I was placed under the care of a senior obstetrician. At each scan there were measurements that fell below the 5th percentile.

Some (but not all) of the ultrasound reports note a ‘growth restricted fetus’.

While growth was monitored throughout my pregnancy, the doctors responsible for my pregnancy seemed to regard the cause of Clementine’s restricted growth to be either a mystery or related to the Turner syndrome diagnosis.

Fetal death and stillbirth

On 27 July 2013, at 37 weeks and 4 days, I felt that my baby had stopped moving. I did not feel her move throughout the day. I thought I would feel her move overnight. I did not feel her move overnight and contacted a midwife in the morning.

We presented at the hospital in the morning of 28 July 2013. An ultrasound confirmed fetal death in utero. Labour was induced. My membranes ruptured spontaneously during the birth and, when this happened, there was a significant amount of blood in the liquor.

Autopsy findings

The autopsy findings were inconclusive.

To compound the pain we experienced at losing our daughter, the way that we received the autopsy results was inadequate and insulting.

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

Approximately six weeks after our daughter died, we returned to the hospital to meet with our obstetrician and receive the autopsy report. Returning to the hospital where I had, so recently, given birth to our dead child was deeply traumatic. The meeting was an extremely negative experience that further compounded our trauma.

Our obstetrician had not read the autopsy report prior to the meeting and we were kept waiting in an adjoining room while nurses printed the report for him. One of his opening remarks to me was, "babies die in Africa all the time."

I had prepared a list of detailed questions (see Appendix A) that I hoped to have answered to help me understand why our daughter had died. His tone of voice and body language made it very clear that he was unwilling to discuss my questions.

When I asked him about trying to have another baby, his response was "you need to try again to land the plane successfully." To me, this implied that I had played some role in the death of my daughter.

He left the meeting after approximately 15 minutes when a person knocked on the door and said that he was needed.

My impression was that the doctors responsible for my pregnancy had no interest in attempting to identify the cause of our child’s stillbirth. I do not know if a Root Cause Analysis was conducted following my daughter’s death. If it was, we did not receive a copy of the report.

I feel that our concerns about the cause of Clementine’s death were not followed up. I believe that the Turner syndrome diagnosis distracted those reviewing her death from looking more closely at the presence of fetal blood when my membranes ruptured as well as the identification of the velamentous cord insertion in the autopsy findings.

TERMS OF REFERENCE

E. Research and education priorities and coordination, including the role that innovation and the private sector can play in stillbirth research and education

. Research coordination and application of research in practice

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) is the peak professional body for obstetrics and gynaecology in Australia and New Zealand. The College develops guidance that takes into consideration all available evidence and research. The College publishes statements that are evidence-based rather than a reflection of personal opinion.

RANZCOG published a statement on vasa praevia in 2012 (C-Obs 47) and updated this in July 2016 to reflect the latest research.

My view is that the doctors responsible for my care failed to follow the guidelines published by RANZCOG in the College statement on vasa praevia. My belief is that my doctors failed to make evidence-based decisions and, instead, relied on their personal opinions.

I urge the Select Committee – in the strongest possible terms – to question hospitals on how they ensure the guidelines published by RANZCOG are followed.

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

. Low PAPP-A levels as a research priority

My PAPP-A result was particularly low (0.2 MoM). The first trimester ultrasound report notes that this result is associated with an increased risk of poor pregnancy outcome.

While research does suggest an association between low PAPP-A level and abnormal placentation (formation of the placenta), my low PAPP-A result did not appear to trigger placental surveillance during my pregnancy.

Three studies have recently investigated the association between low PAPP-A level and the rate of stillbirth. In 2010, a retrospective cohort of 19,536 women found a statistically significant association between PAPP-A levels below the fifth percentile and rates of stillbirth (P < .002). However, the 2011 large historical cohort study of 28,566 women found no predictive value of a low PAPP-A level (below the fifth percentile) for stillbirth. A 2009 study found that among women with low PAPP-A levels (below 0.3 MoMs), a higher risk of stillbirths was found when an abnormal placenta was seen on ultrasound, potentially explaining the link between a low PAPP-A level and rates of stillbirth. Current evidence regarding the relationship of low PAPP-A levels with stillbirth rates remains conflicting, and additional studies are required to elucidate the relationship between a low PAPP-A level and rates of stillbirth, and the mechanism that would lead to stillbirth in such cases4.

I ask the Select Committee to consider the relationship between a low PAPP-A level and stillbirth, and the mechanism that would lead to stillbirth in such cases, as a research priority.

. Gathering and capturing information during stillbirth

We were fortunate to have a highly experienced midwife present during my labour and Clementine’s birth. While Clementine’s autopsy results were inconclusive, our midwife was able to gather crucial information during the birth to help us understand the probable cause of Clementine’s stillbirth.

She presented her findings at a review meeting at the hospital and there was consensus that her conclusions on the probable cause were very likely to be correct.

I am frustrated that there is no system or process to formally capture our midwife’s findings and that, based on the autopsy report, Clementine is recorded as yet another ‘unexplained late-term stillbirth’.

Our collective understanding of stillbirth is limited when data is not collected during a stillbirth and also when there is no centralised system or process to capture the data that is gathered during a stillbirth.

I ask the Select Committee to examine the processes that are in place to gather information during a stillbirth. I would argue that two midwives need to be present at every birth of a stillborn child. One midwife needs to care for the mother and child and the other midwife needs to take responsibility for gathering information that may help determine the cause of the stillbirth.

There is a critical need for centralised systems and processes to capture this information.

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4196811/

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

. Education of doctors as a priority

My experience leads me to believe that there is an urgent need for obstetricians and gynaecologists to receive education on supporting parents who have experienced stillbirth.

The comments I received from doctors while I was in the hospital with Clementine were often highly inappropriate and unhelpful. For example, one doctor was determined, while I was holding Clementine’s body, to engage me in a discussion on the brand of contraceptive pill I had previously used. When I couldn’t recall the brand, she insisted on listing brand names to prompt my memory.

The treatment we received at the hands of the doctor who managed the autopsy review meeting served to further compound our trauma.

I have had some involvement with Sands (a charity that supports bereaved parents) and have learnt that their education programs on supporting bereaved parents are typically attended by nurses but that they find it very difficult to engage doctors.

I ask the Select Committee to examine opportunities to educate doctors on supporting bereaved parents.

F. communication of stillbirth research for Australian families, including culturally and linguistically appropriate advice for Indigenous and multicultural families, before and during a pregnancy . Failure to communicate stillbirth research during pregnancy

Throughout my pregnancy with Clementine, a number of issues were identified. Research indicates that the issues that were identified meant I faced a higher than average risk of stillbirth.

The issues identified during my pregnancy that are associated with a stillbirth risk are:

o Low PAPP-A result5 o Single Umbilical Artery6 o Low-lying placenta (represented a vasa praevia risk)7 o Intrauterine growth restriction (IUGR)8

I also had a velamentous cord insertion (this was not identified). Velamentous cord insertion is a vasa praevia risk factor and vasa praevia is associated with a higher risk of stillbirth.

Despite there being a number of identified stillbirth risk factors, the risk of stillbirth was never discussed with me. I remember asking, after I had been told that Clementine had died, “Does this happen?”

I had no awareness of stillbirth as an issue or as a possible outcome for my pregnancy.

There was a complete failure to communicate the stillbirth research to me or my husband during my pregnancy with our child.

5 https://www.medpagetoday.com/obgyn/pregnancy/193 6 https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/perinatal-reproductive/neonatal- ehandbook/congenital-abnormalities/single-umbilical-artery 7 https://obgyn.onlinelibrary.wiley.com/doi/pdf/10.1046/j.1469-0705.1998.12060430.x 8 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995658/

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

I do remember being told by a senior obstetrician that I should, “Come to the hospital for monitoring whenever you like.”

His instructions were unclear. He needed to explain that stillbirth was a risk and that I needed to immediately come to the hospital for monitoring if I ever felt any change in my baby’s movements.

There was a change in Clementine’s movement (I noticed that she had stopped moving) but because the risk of stillbirth had not been explained to me, I waited until the next day to make contact with a midwife to report the change.

From my discussions with other women who have experienced stillbirth, waiting until the next day to report the change in movement is extremely common.

I believe that health professionals are extremely reluctant to mention the risk of stillbirth to pregnant women. I believe that this reluctance stems from a concern that the information will cause the pregnant woman to become distressed or fearful. A failure to share relevant information is unacceptable. From my perspective, the key is in HOW the information is communicated. It is possible to communicate this information in a way that empowers the pregnant woman and helps her to see that the health professionals responsible for her care are doing everything within their power to prevent the worst possible outcome.

I strongly urge the Select Committee to investigate the processes that are in place within hospi tals to raise awareness of stillbirth with pregnant women, and the steps that pregnant women can take (e.g. immediately reporting a change in movements) to reduce the risk of stillbirth.

. Failure to discuss stillbirth research following a stillbirth

In the weeks following Clementine’s stillbirth, I performed extensive research in an attempt to understand what had happened. I documented all of my questions (please see Appendix A).

I understood that Clementine’s autopsy would not necessarily give us definitive answers. However, I did expect that when we met with the senior obstetrician to receive the results, that I would have the opportunity to discuss my questions. I understood that definitive answers to my questions may not exist, but I expected to receive all available information.

Devastatingly, this was not the case.

The senior obstetrician appeared very surprised that I had prepared questions. He also appeared extremely defensive. He was unwilling to enter into discussion or to share his thoughts on how the stillbirth research could help us understand what had happened.

He left the meeting after approximately 15 minutes and he did not return.

I have spoken to other women who report similar responses from doctors when receiving their child’s autopsy results.

I urge the Select Committee to examine the processes in place at hospitals to communicate stillbirth research to families when receiving autopsy results.

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

SUMMARY

I urge the Select Committee to:

. Question hospitals on how they ensure the guidelines published by RANZCOG are followed;

. Consider the relationship between a low PAPP-A level and stillbirth, and the mechanism that would lead to stillbirth in such cases, as a research priority;

. Examine the processes that are in place to gather information during a stillbirth and the processes and systems that exist to capture this information;

. Examine opportunities to educate doctors on supporting bereaved parents;

. Investigate the processes that are in place within hospitals to raise awareness of stillbirth with pregnant women, and the steps that women can take (e.g. immediately reporting a change in movements) to reduce the risk of stillbirth;

. Examine the processes in place at hospitals to communicate stillbirth research to families when receiving autopsy results.

Thank you again for the opportunity to contribute to the future of stillbirth research and education in Australia.

I have written this submission to honour the memory of my daughter, Clementine, and all of the babies who have died as a result of stillbirth.

Please do not hesitate to contact me if I can provide any further information.

Susannah Aumann

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

Appendix A: Questions documented in the weeks following Clementine’s stillbirth

I prepared these questions in the weeks following Clementine’s stillbirth. My hope was that I would have the opportunity to discuss the questions and gain some insight when we met with the senior obstetrician to receive Clementine’s autopsy results.

When we attended the autopsy review meeting, it was devastating to realise that our senior obstetrician had no intention of discussing these questions with us. In fact, he left the meeting after approximately 15 minutes and did not return.

Clementine Jones – Questions

1. Week preceding Clementine’s stillbirth

. I slipped and fell on my bottom on Sunday 21 July. I had a CTG on Monday 22 July and it indicated Clementine was well.

Could the fall have caused a problem that would not be detected by the CTG?

Could this fall have contributed, in any way, to Clementine’s death?

If yes, how did it contribute? If no, can we state this definitively? Why or why not?

. On Thursday 18 July, Dr. XXX recommended regular monitoring at FMAC. I had a CTG on Thursday 18 July and Monday 22 July (after fall) but you recommended that there was no need for further monitoring.

Why was there a difference in opinion on the level of monitoring required?

Could increased monitoring during the week of Monday 22 July have prevented Clementine’s death? Why or why not? Can we state this definitively?

. Eleanor had a mild form of croup and I had a cold in the weeks preceding Clementine’s stillbirth.

Could this have contributed to Clementine’s death?

If yes, how did it contribute? If no, can we state this definitively? Why or why not?

2. Fetal movement

. My belief, based on my recollection, is that Clementine’s movements were normal until Saturday 27 July when she did not move. I do not believe there was reduced fetal movement. There was normal movement and then no movement from 27 July.

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

Are the findings in line with this?

If the findings are inconclusive, does my recollection of Clementine’s movement give any insight into what might have happened?

3. Ultrasound to confirm no heartbeat

. I had an ultrasound on Sunday 28 July to confirm that Clementine had died.

Did this ultrasound provide any information on the reason that Clementine died?

Did the measurements taken by the sonographer give any insight into when Clementine died?

Is the timing in line with my belief that she died suddenly in the early hours of Saturday 27 July?

. I have read that problems with the umbilical cord are often given as a reason for a stillbirth but this is difficult to confirm after the birth as the cord is not in the same form it was before the birth.

Is this ultrasound only used to confirm there is no heartbeat?

Do sonographers look at the cord when confirming there is no heartbeat?

If not, how possible is it that this process could be changed? How would we begin to implement a change in process?

4. Obstetric Discharge Summary – Velamentous cord

. My Discharge Summary documents “Cord Vessels by 2, Velamentous”. I know that the single umbilical artery was identified at the 19 week ultrasound but cannot find any reference to a “velamentous cord” on any of the ultrasound reports. I have read about velamentous cord and have learnt it occurs in 1 in 100 singleton pregnancies.

What causes velamentous cord? Does it occur randomly or are there known causes?

How much of the cord was velamentous? Where is this on the spectrum of VCI severity?

Case Report – Velamentous Cord Insertion in a Singleton Pregnancy: An Obscure Cause of Emergency Cesarean—A Case Report – Case Reports in Obstetrics and Gynecology – Volume 2012 (2012), Article ID 308206, 4 pages

This condition has been diagnosed by ultrasonography with a sensitivity (true positive rate – correctly identify the people who do have VCI) of 67% and specificity (true negative rate – correctly identify the people who do not have VCI) of 100% in the second trimester.

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

Several studies, have shown that when specifically sought, velamentous insertions and thus vasa praevia can be reliably recognised.

A recent report indicated that 85% of obstetricians in England and Wales stated that VCI is not routinely screened during anomaly scanning.

Why didn’t we know about the velamentous cord insertion? Did radiographers/radiologist try to see it? Was it looked for and couldn’t be seen or was it never specifically checked?

Is there a standard checklist that a radiographer/radiologist follows or is it determined by the individual?

How often is VCI diagnosed before birth? It clearly can be diagnosed before birth. Why didn’t this happen?

. Colour Doppler is helpful in locating the cord insertion and identifying the vessels that extend from the cord insertion into the placenta. Was Colour Doppler used for my ultrasounds?

. I have read that VCI is associated with SUA. Should the SUA have been seen as a red flag for VCI? “Thirteen percent of cases of single umbilical artery are associated with velamentous insertion of the cord”.

. I have read that VCI is associated with IUGR. Why wasn’t CI checked as a potential cause of Clementine’s growth issues? VCI is more common (1 in 100) than other potential causes that were considered (e.g. chromosomal – 1 in 168 for Down Syndrome). How likely is it that the VCI was the cause of Clem’s growth issues?

. A first trimester cord insertion in the lower uterine segment should alert the sonologist that a subsequent scan may reveal a velamentous insertion, or a vasa praevia.

Did I have a cord insertion in the lower uterine segment? The 19 week ultrasound has notes about the placenta being low lying – does this mean the cord insertion was in the lower uterine segment? Should this have been seen as a red flag for VCI?

. I understand that VCI is a risk factor vasa praevia. Vasa praevia develops as a low lying placenta remodels and "moves" up in the uterus. I understand that my placenta was low lying. Do we know if I had vasa praevia? The 19 week ultrasound states that “no vessels are seen crossing the cervix”. Does this mean I did not have vasa praevia? Could it have developed and been missed?

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

. Have read that “complications of velamentous cord insertion can lead to stillbirth”. I have read that VCI means that the exposed vessels are at risk of rupture leading to fetal haemorrhage and death. Could a vessel rupture have caused Clementine’s death? How likely is this? How common is vessel rupture when VCI occurs? Would I have had a higher risk of rupture given placenta was lower rather than higher?

. I have read that, when VCI occurs, the risk of vessel rupture is greatest in the final three weeks of pregnancy. Is this correct?

. I have read that VCI can mean that the baby can compress the vessels which would lead to death. Is it possible that this was the cause of Clementine’s death?

. If a vessel ruptured, how much time would have passed between the rupture and Clementine’s death? If a vessel was compressed, how much time would have passed?

. If a vessel did rupture, is there any way of knowing when this occurred? I have read the vessel rupture often occurs while in labour. I would like to understand if the vessel rupture caused Clementine’s death or if she died of another cause and the vessel rupture occurred while I was giving birth to her.

. If VCI had been diagnosed before Clementine’s birth, how would this changed the plans for her birth? I have read different scenarios when VCI is diagnosed before birth – scheduled c-section, bedrest, vaginal birth. What would have been the likely scenario if VCI had been diagnosed?

. Interested in thoughts – “In most cases, your doctor will recommend a Caesarean section at 35 weeks gestation in order to avoid the possibility of rupture caused by a vaginal birth. Although undiagnosed velamentous cord insertion and vasa praevia can lead to stillbirth, babies born with these conditions are healthy about half the time even when the condition is not diagnosed in advance”. From http://pregnancy.answers.com

. Interested in thoughts – “Once the prenatal diagnosis of velamentous insertion is made, the following issues should be stressed : 1) to determine the exact localization of the insertion site is critical for proper obstetrical management. If the insertion site is in the lower segment, the risk of having vasa praevia is increased. Therefore, a cesarean section must be offered to avoid the serious complications of fetal bleeding. On the other hand, if the insertion site is in the uterine fundus, no changes in the obstetrical management seem to be necessary. However, the possibility of compression of the velamentous vessels should be seriously considered, and the patient should be followed-up with serial fetal heart rate monitoring in order to detect fetal distress; 2) careful examination of the fetal anatomy, including fetal echocardiography, must be performed to rule out associated anomalies; and 3) serial examinations for fetal growth must be

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

offered, since the incidence of small gestational age infants (defined as birth weight two standard deviations below the mean) with a velamentous insertion of the umbilical cord has been estimated to be 7.5%”

5. Small for gestational age

. So much of my pregnancy was focussed on Clementine’s growth. I know there was a view that the Turner Syndrome diagnosis was the reason for the finding that Clem was small for gestational age. However, the information from VCGS states (in relation to amniocentesis) “this result has not provided an explanation for the ultrasound finding that your baby is small for its gestational age”.

Do we have a clearer picture now on why Clementine was small for her gestational age?

Was she IUGR or small for gestational age?

Could the VCI have been the cause?

Is Turner Syndrome a more likely cause than VCI?

6. Obstetric Discharge Summary – Blood stained liquor

. When my waters broke, I could see that the bed appeared to be almost covered in blood. The bleeding seemed to stop quite quickly and did not begin again.

What was the cause of the bleeding?

I have read that when a vessel ruptures the baby “bleeds out”.

Could the blood that I saw be related to a vessel rupture?

7. Chromosome 14 duplication

. Could my duplication on chromosome 14 have been a possible cause or a contributor? Dr. XXX mentioned that he would expect the most likely manifestation of the duplication would be that I would have experienced miscarriages. Why? If a chromosomal duplication could lead to a miscarriage could it cause a stillbirth?

8. Clementine’s experience

. Did Clementine feel pain when she died?

. Does the evidence suggest that she died quickly? How much time would have passed?

Sus annah Aum ann – Submission to Select Committee on Stillbirth Research and Education

. Did she know, at any level, what was happening?

. Can an unborn baby lose consciousness before death?

9. Observations

. Clementine had blood coming for her nose fairly regularly from the time she was born. When I visited her at Tobin Bros one week after she died, I held her upright against me and blood came from her nose again. Why was this happening?

. When I held Clementine upright against me not long after she was born, meconium came from her. Does this mean she was not in distress at any point?

10. Risk of stillbirth

. Hindsight is 20/20 but when I review my pregnancy, it appears that there were a number of stillbirth risk factors at play: advanced maternal age, Clementine’s Turner Syndrome diagnosis, low PAPP-A, IUGR(?) and a SUA.

I am keen to understand more about how the risk of stillbirth is typically discussed with pregnant women. I feel that if I had been more informed on the seriousness of this risk, I would have been quicker to come to the hospital when I felt that Clementine had stopped moving. Even if this would not have changed the ultimate outcome, it would give me some peace of mind if I felt I had understood the risk and, given that risk, had acted appropriately.

11. Different outcome

. Could I have done anything differently? Could electing to have had increased fetal monitoring during the week before Clementine’s death have prevented her death? Could presenting at the hospital on the Saturday rather than the Sunday have prevented her death?

. Is there anything anyone could have done to prevent Clementine’s death?

12. Future pregnancies

. If we have a known cause for Clementine’s death, how likely is it that this could recur?

. If Clementine’s death is related or possibly related to the VCI, how likely is it that this could recur?

. If Clementine’s death could possibly be related to my chromosomal duplication, it seems like we wouldn’t be able to prevent a future miscarriage/stillbirth – is this correct?

. How long should we wait before trying to conceive again?

. How would the hospital treat a future pregnancy? Would I automatically be classified as high risk?