Rainbow Clinic – Understanding the Need For and Impact of a Specialist Antenatal Service for Pregnancy After Loss.

This presentation will review data regarding the medical and psychological challenges of pregnancy/ies after loss. It will describe the evolution of a model of care for parents after loss and the components of care. The presentation will then provide evidence of the effectiveness of specialist pregnancy after loss services. 

Dr. Alexander Heazell is Professor of Obstetrics and Director of the Tommy’s Stillbirth Research Centre, University of Manchester, UK and Consultant Obstetrician at St Mary’s Hospital, Manchester. His research portfolio includes science, clinical and qualitative research studies to gain better understanding in order to prevent stillbirth and improve care for parents after stillbirth or perinatal death. He has received over £4M of grant income and has published over 200 research papers. He led the Stillbirth Priority Setting Partnership, co-led the 2016 Lancet Ending Preventable Stillbirth Series and was the lead investigator for the national MiNESS case control study, the evaluation of the Saving Babies Lives programme and the National Rainbow Clinic Roll-Out Study. He has also collaborated with journalists to make the Stillbirth Stories archive (www.stillbirthstories.org) and with an artist on the StillBorn project (www.stillborn-project.org.uk). 

Dr. Heazell has disclosed that he does not have any real or perceived conflicts of interest in making this presentation.

This presentation was part of the Stillbirth Summit 2021.   This individual lecture will be awarded .5 hours of continuing education credit to include viewing the lecture and completing evaluation and post-test.  Once received a certificate will be emailed to the address you provide in the post-test.  If you did not register for the Summit WITH Continuing Education, you can purchase the continuing education by clicking here.  This purchase will provide you access to all Stillbirth Summit 2021 lectures including continuing education credit. There is no charge for viewing the presentation.

To receive continuing education credit for this lecture, the participant must complete the evaluation and post-test.

Phillip Williams: Hi, we are Phillip and Stacey Williams. Our son Max was stillborn on April 23rd, 2016 at 38 weeks. The cause was determined to be CMV.

Stacey Williams: Alexander Heazell is Professor of Obstetrics and Director of the Tommy’s Stillbirth Research Centre, University of Manchester, UK and Consultant Obstetrician at St Mary’s Hospital, Manchester. His research portfolio includes science, clinical and qualitative research studies to gain better understanding in order to prevent stillbirth and improve care for parents after stillbirth or perinatal death.

He has received over £4 million of grant income and has published over 200 research papers. He led the Stillbirth Priority Setting Partnership, co-led the 2016 Lancet Ending Preventable Stillbirth Series and was the lead investigator for the national MiNESS case control study, the evaluation of the Saving Babies Lives program and the National Rainbow Clinic Roll-Out Study. He has also collaborated with journalists to make the Stillbirth Stories archive and with an artist on the Stillborn project.

Professor Heazell’s presentation is titled, Rainbow Clinic – Understanding the Need for and Impact of a Specialist Antenatal Service for Pregnancy After Loss.

Professor Alexander Heazell: Good morning. My name is Professor Alex Heazell. I am a Professor of Obstetrics at the University of Manchester and the Lead Clinician for the St Mary’s Rainbow Clinic, and is a real privilege to be able to talk to you today about where our research has gone in the last two years for Rainbow Clinic, and to give you an update about understanding the need for and the impact of a specialist antenatal service for pregnancy after lose. I really want to thank Star Legacy for once again hosting this amazing meeting.

I want to just cover why previous stillbirth is so important. We know there are data about the biomedical risks and the risk of complications in future pregnancy. The psychological challenges posed by pregnancy after loss, particularly anxiety and stress during pregnancy and mother, and infant bonding. Together, we know that those two things can have an impact on the baby.

What do we know about risk factors and stillbirth? Well, the majority of stillbirth occur in women with no apparent risk factors and those that confer comparatively moderately increased risk. However, studies have shown that the previous stillbirth increases your risk between 2- and 10-fold increased risk of a subsequent pregnancy. A meta-analysis showed that the pool and risk was about 4.7 times greater than women that have not had a stillbirth.

In addition, we knew that women with a history of stillbirth have got increased complications in a subsequent pregnancy. ‪Mairead Black shared in 2008, women with a history of previous stillbirth had an increased risk of preeclampsia, prematurity, low birthweight, placental abruption, and induction of labor.

Why do complications recur in moms that have had a stillbirth? Well, it could be because that stillbirth was related to maternal medical conditions that has got worse or that they have risk factors for stillbirth. Things like smoking and obesity are still there. Also, we recognize that this can be due to recurrent conditions, and that can be rare inflammatory placental conditions, so things like chronic history of cystic interstitial cystitis or villitis of unknown etiology or maternal vascular complications. It can also be due to genetic conditions. Chromosomal disorders and single gene disorders.

In Rainbow Clinic, we were able to investigate this because we’ve now got a cohort of 266 women who had their stillbirth in our institution, so were investigated in the same way, and then had their baby through Rainbow Clinic. We looked at these 266 women, 69 of whom had an adverse outcome in the subsequent pregnancy. There seemed to be 3 perinatal deaths, and about 1 in 7 women had a preterm birth and about 1 in 8 had a baby with a small gestational age. We defined this outcome as a baby that was born before 37 weeks gestation or a baby was born less than 10th centile.

Women who have preexisting medical conditions were twice as likely to have an adverse outcome in subsequent pregnancy and women who smoked in their subsequent pregnancy had an adverse outcome 6.8 times more frequently. You can see that, actually, it was very rare to smoke in subsequent pregnancy which gives you a very wide confidence interval ranging between 2 to 23 here.

We didn’t see, and we were quite surprised not to see, any relationship between the classification of the cause of stillbirth or the gestation of stillbirth and the association with subsequent pregnancy outcome. However, the placental histopathological finding really did alter the risk of adverse outcomes. If the stillbirth had evidence of maternal vascular malperfusion, there is an 11-fold greater chance of having an adverse outcome in the subsequent prednisone. If there was fetal vascular malperfusion, then 9-fold increased risk of adverse outcome in subsequent pregnancy. Chorioamnionitis, there was a 6-fold increased risk.

This really has to do with how recurrent the conditionals are. This is the clinicopathologic description of the placenta. You can see that villitis, if it is in this blue circle here, this was in the first pregnancy only. In the yellow is in the second pregnancy only, and in the middle, it occurred in both pregnancies. You can see it was in both pregnancies in 46% of cases. Maternal vascular malperfusion was in both pregnancies in 37% of cases, fetal vascular malperfusion 28%, and delayed villous maturation in 21%.

We also went to do very detailed microscopic studies of the placenta and checked the placental phenotype. There was no difference between the stillbirth and the subsequent pregnancy. There was no difference in inflammatory cells, in macrophages. A tendency towards the number of blood vessels increased, but there was no difference in number of proliferating cells, the thickness of the trophoblast, which is the active cell type of the placenta. Number of syncytial nuclear aggregates, or the amount of fibrin. Actually, we’re not seeing more live babies in subsequent pregnancies because the placental pathology is going away rather than placental pathology is still present.

In summary, the risk of adverse outcome in the subsequent pregnancy relates to maternal medical conditions, cigarette smoking and placental pathology. Understanding and treating placental pathology is key to preventing adverse outcomes in subsequent pregnancies. Also, things like we must try and stop cigarette smoking in subsequent pregnancy, the good news is that if you stopped in the first trimester of pregnancy, the risk of stillbirth is the same as women who are non-smokers, and women who have had a stillbirth before are more likely to quit compared to women who had non-fatal outcomes. Aspirin reduces the risk of perinatal deaths, and also immunomodulatory treatment in women who have these rare immune mediated conditions of the placenta.

When we wanted to look in more detail women’s experiences, we did the Rainbow Clinic Study to look at the pregnancy, labor, and postnatal experiences and outcomes of women coming to the Rainbow Clinic and to assess the wider impact of the service.

We included moms who had prior stillbirth, neonatal death, or late termination of pregnancy, women had to be currently pregnant, and we also included partners where possible.

It was a prospective study, and we used validated questionnaires to assess anxiety, depression, and quality of life. We measured hair cortisol in a sample of women, and we did qualitative surveys using semi-structured interviews with thematic analysis and focus groups and questionnaires.

Looking at anxiety and stress, we used the measures of Cambridge Worry Score and generalized anxiety disorder with seven item questionnaires. The left-hand column is all of the women that completed the questionnaires, the middle column here is just the women who completed at full sets of questionnaires at 15 weeks, 32 weeks, and 6 weeks postnatal. You can see that there was a gradual reduction in anxiety by these standardized measures as pregnancy persisted.

We also saw this in the hair cortisol levels, which were the highest levels in the first trimester and fell through to the third trimester. Quality of life assessed by visual analog scale between zero for awful, no quality of life to 100%, full quality of life, increased from 15 weeks through to 6 weeks postnatally. The Edinburgh Postnatal Depression Score, the threshold of which significant depression is 13. That’s the dotted line here. You can see, again, fell from 15 to 32 to 6 weeks postnatally. The proportion of women greater than the loss fell as pregnancy progressed. I think we can be very clear that women in pregnancies after loss have increased symptoms of anxiety, depression, and stress. That’s the same with the literature.

The things that came out of the qualitative interviews really were that navigating pregnancy after loss is about expecting the worst, but hoping for the best. When we’ve mapped these on to the Dual Process Model of Grief to look at life experience in pregnancy, really lots of behaviors that focus on loss are really about how quiet and unspoken the subject of baby loss is, and in particular, how it isn’t spoken about how you navigate through another pregnancy.

The things that are restoration-orientated, which focus on rebuilding, looked about protecting others, exercising control, having hope that this pregnancy will result in a live baby. It’s really well recognized that actually the life experience you oscillate in between these two lose-orientated and restoration-orientated approaches as you move through your grief.

The thing that is unusual about pregnancy after loss is that it forces you back through some of the things and decisions and places. It may be that you have to go back through the same maternity unit. You have to have scans, you have to have investigations. Actually, you’re constantly reliving the situation of loss, and that can fall to the focus to being more loss-orientated than restoration-orientated.

In terms of how we’ve evaluated pregnancy after loss services, there actually haven’t been very many published studies. There was this study from the Brisbane Pregnancy After Loss Clinic, and they interviewed 10 mothers in 2015, all of whom had a live baby in the next pregnancy and their data were presented in BMC Pregnancy and Childbirth in 2017.

The thematic analysis talking about the overall experience of pregnancy after loss and in particularly unique experience of first pregnancy after loss. That there was invaluable support from pregnancy after loss clinics, but they took the experiences of other services and made some recommendations for other pregnancy after loss services, and called for evaluation of the pregnancy after loss clinic models. They recognized the need for alternative services, and advice particularly from peers from mother to mother to enable effective support for pregnancies after perinatal loss.

The other thing that we were able to do through focus groups, capturing the value of clinic, is we use this technique called social return on investment methodology. The social return on investment methodology is a very good way to catch intangible costs. Things like grief, anxiety, depression, which are often either looked by more traditional health economic analysis. We chose to use this to evaluate Rainbow Clinic.

You can see that it’s quite a considerable investment to run the clinic. It is over £200,000 a year, but actually the value that the clinic created for those families was just under £1.4 million per year. That actually gives us a ratio, for every £1 that is invested in the service, the clinic generates £6.10 worth of value. That’s in the range of other studies that have shown really somewhere between 3- and 18-fold returns for different investments.

You can see that the different outcomes here on that left-hand chart, there is different attribution to how much of that comes in the specialist clinic. Say, for example, the lowest is actually 64% of the reduced incidence of depression was attributed to the clinic. Whereas the reduced use of ultrasound scan is completely attributed to the clinic. Reduced complaint mitigation, 95% of that was linked to the specialist service. Reduced anxiety, 88% attributed that to coming through the service.

Then when you look at the different values attributed, is very heavily driven by the value of having a live born baby, but other very significant values generated were the reduction of anxiety, the reduction in depression, and also sense of control and ability to plan through the pregnancy were all fairly highly valued by parents. Even if you subtracted the birth of a live baby out of the value generated by clinic, you still have a ratio of a threefold increase.

How does this fit in with what we know about women’s experiences in subsequent pregnancies? Well, we know that from this meta-synthesis done by Tracey Mills in 2014. We put together this line of argument synthesis on the existing qualitative data. That stillbirth or neonatal death profoundly alters the reality of subsequent pregnancies. To survive the anxiety and fears, parents can delay emotional engagement with their baby, and that often deprives parents of support by their traditional social networks. Health professionals try and meet parents’ needs by providing additional antenatal support appointments and technological surveillance. Particularly with ultrasound scanning, but this only provides limited reassurance.

If healthcare professionals do not understand the impact perinatal death, it reduces our capacity to provide adequate emotional and psychological support. Targeted additional support was rated highly in delivering sensitive care.

This was really echoed in Aleena Wojcieszek’s research paper from high-income countries, over 2,700 parents participated, the majority of whom conceived within a year. There was big variation in care. Most parents had antenatal visits and scans that actually care addressing psychosocial needs was much less frequent. Parents whose stillbirth occurred late in their pregnancy were more likely to receive additional care, particularly the option for early delivery. There’s essentially a recognition that a late loss is valued more than an early loss. Between a half and a third of parents felt elements of quality, respectful care were consistently applied, including things like spending time with parents and involving them in decision-making.

We see here that this column here on the left that I’ve highlighted is North America and the UK and Ireland. Actually, North Americans reported having informationally 60% of the time. 60%. Their care providers spent enough time with them, but there were still significant numbers of women that didn’t feel that their carers were always took them seriously, that their care providers didn’t always listen to them.

What is Rainbow Clinic? Rainbow Clinic is a multidisciplinary specialist antenatal service, and its consultants led by me and now two other colleagues. We have research midwives and there’s midwifery ultrasound practitioner, bereavement midwives, and we have continuity of care and carers, and we direct investigations.

We try to base the care on the information we’ve had from the index stillbirth, because we now know which conditions have the highest risk. We also try and make sure that we’re excluding things like thrombophilia, antiphospholipid antibody syndrome in pregnant women. When most women are seen at 23 weeks for placental profile scan, occasionally we do that early at 17 weeks, and we share care with relevant services like diabetes and hypertension clinic, and in some cases the perinatal mental health clinic as well.

This is a map of what it might look like to be under the care of Rainbow Clinic. Early on in pregnancy, ideally before 12 weeks of pregnancy, we would review a mom’s history and making sure she’s on appropriate intervention. In some cases where we’ve looked after the moms and their families after their baby died, we will already have a discharge letter and a plan in place for how we’re going to care for moms in subsequent pregnancy.

Then for some women we’ll do a scan at 17 weeks. This is usually women who’ve either got a condition around CHI, where we want to change the treatment depending on how their pregnancy is progressing. Or for moms who’ve had an early loss or a loss relating to a preterm birth. They then have an anomaly scan at about between 19- and 21-weeks pregnancy?

At 23 weeks, we do a placental profile, and so we look at the umbilical uterine artery doppler. As you see here, there I have got letter C, that’s a healthy uterine artery doppler. I is a notched uterine artery and that is an abnormal placental screen. Then we also look at the placental size and shape. You can see here a healthy placenta here at the bottom in the left-hand column compared to an unhealthy looking and jelly-like fat placenta with echolucent areas which we would anticipate would be the areas of the placenta that aren’t functioning normally.

Depending on whether that placenta profile is abnormal or not, we will then work out how often to do growth and doppler scans after that. Say for moms who have a positive placental screen, so they have an abnormality, we would then start scanning at 26 weeks and then do scans about every two or three weeks after that. If the precentral profile is normal, chance of early onset placental disease or a problem is very small. We would then see them again at 28 weeks, 31 weeks, 34 weeks, 36 weeks, and we aim for our moms to have their baby between 38 and 39 weeks, depending on the mode of birth.

You can see this test isn’t perfect. The area under the curve is about 0.72, but the negative projected value is pretty good, and we can be quite sure that women who have a normal scan are very unlikely to have a significant problem before 28 weeks gestation. We can be certain that they’re not missing anything by delaying that scan.

Currently, we’ve got Rainbow Clinics that are getting set up around England because we’ve had support to do that, Wales is missing from the map, but there’s actually a Rainbow Clinic in Cardiff, and we’ve got a variety of sites at different stages. We have clinics in purple here are active and recruiting moms. We have some that are on the pathway to start developing the clinic, and the gray ones are clinics that are ready to launch.

We’ve also had interest, I should say, from the United States and Australia in providing similar kind of services, and we’re always willing to help them support other units in developing a model for them.

In particular, we developed a dashboard for Rainbow Clinics so clinics can compare their outcomes in terms of mode of birth, the number of visits that the moms are having, the number of visits by gestation and also the number of babies that are born preterm and the mode of birth for preterm delivery. Sites is anonymized at the moment, so we know which site is which, but different sites can see their own data but also compare to the national main data for Rainbow Clinics.

We’ve also just started the National Rainbow Clinic rollout study and that’s to explore the pregnancy, labor, and postnatal experiences and outcomes of women coming to these new Rainbow Clinics. I’m going to say we can keep learning about the nature of care that we need to provide to achieve a positive pregnancy outcome.

Women are checked that they can participate in the study at the beginning of their pregnancies. We’re then using the similar questionnaires that we used before. The data I’ve just presented to you at their first and last Rainbow Clinic appointments. We’re capturing women’s experiences of attending the rainbow clinic, and collecting their outcome data after they have given birth. Seeing whether their baby was live born, what the birth weight was, and at what stage of pregnancy she gave birth.

What we really hope that in sharing this with you is that you can see that the Rainbow Clinic model of care has been developed from high grade evidence that shows increased risk of subsequent stillbirth and psychological problems. We’ve begun to try and establish best practice. What does best practice look like for pregnancy after loss? In our site, implementing the model of care improves pregnancy outcomes and reduces anxiety by providing a more efficient service with continuity of care. We’ve now wrote this out in 20 units across the UK to date. Over the next three to five years, the National Rainbow Clinic rollout study is going to continue to collect the process and outcome measures that are going to keep on informing that.

I’m pleased to say that we’ve also just received funding to conduct a study, looking at the impact of pregnancy after loss on partners, because they’re the primary supporters for moms in pregnancies after loss. We’re trying to get a better handle on how we might support not only women be comfortable, but also their partners as well.

Just to sign post you to the Rainbow Clinic website that’s hosted here. We do have a Twitter account. This is my Twitter handle at the bottom, but MRainbowclinic is the Manchester Rainbow Clinic Twitter feed, if you’re interested. We will be updating a series of national and international resources via the website in the near future.

I’d like to end there. I just really thank the organizers of the meeting for giving us the opportunity to share the data that we got from Rainbow Clinic. I hope that if you have any questions, that please do get in touch with me. My email address is [email protected] and either myself or the Rainbow Clinic midwives will get back in touch as soon as we’re able to. Thank you.