Our third Circle of Support panel coincided with the launch of our TFMR private support group and a dedicated information space on our website.
Presented in conjunction with our national partner Genea, our expert panel consisted of Perinatal Social Worker Terry Diamond, Genea Genetic Counsellor Katie Ellis, founder of Mackenzie’s Mission Rachael Casella, Pink Elephants Peer Support Manager Anna Kratovil and was hosted by Genea Corporate Communications Manager Elizabeth Gosch.
We began with Terry and addressed the emotional implications of TFMR.
What are some of the strategies people can employ to help them through the decision-making process for TFMR?
We need to acknowledge how different the experience can be for people depending on how protracted the process is and how early you find out there may be something wrong. If you find out at an earlier scan or through questionable test results that there MAY be a problem, but then you have to wait a certain number of weeks before further investigations can be done, it can be an agonising and traumatic wait as you think about all the what-ifs etc, for a condition or situation that you still don’t have a definite answer for.
One of the hardest things about TFMR is that it renders people out of control of a situation. Try to stay present, stay with the information that you know NOW. Continue to nurture your pregnancy and yourselves with a lot of care and kindness while you’re sitting and waiting for more information. Try to seek as much educational material, for example peer reviewed journal articles, and stay away from resources like Dr Google which essentially just cause more anxiety. Also write down any questions you may have so that when you meet with your medical care provider or the maternal fetal medical department, you feel like you’ve been proactive in trying to take some control over the situation.
Do you think it’s helpful to share with friends and family what is happening? And how much information should people share with others?
It’s important to have good support around you and if we’re able to share honestly about what’s going on, we begin that process of starting to break down the barriers around TFMR and change the narrative around the conversation. It’s an important to bring TFMR into a space where people don’t sit uncomfortably with it. It’s only recently that people are beginning to feel more comfortable in sharing making decisions for themselves and their baby or their family without feeling like they will be judged by other people.
It’s very individual to the situation as to what you’re going to share with family and friends. Be careful about who you share with because you don’t want too many people having input into the decision. It’s very personal for couples – even two families in the same situation may not choose to make the same decision for their pregnancy. However if you do have people that you are very close to that offer you support in your life, then sharing the situation and what you’re going through with them, will allow them to give you the support you need to hold that really difficult place.
What about the days and weeks after TFMR? Do you think it’s helpful to mark milestones like due dates?
When you’re making the decision to terminate a pregnancy for medical reasons, that’s a really tough decision to come to and the impact of that loss is the same as losing a pregnancy or a baby. So it’s absolutely relevant to mark those milestones and celebrate the joy of the baby you had with you, even if only for a very short period of time.
(See our Marking the Loss resource for ideas on how to commemorate your baby.)
Obviously TFMR is devastating and upsetting. How can people recognise if they may need help from a professional during their recovery?
When you’re grieving a perinatal loss, it’s normal to have really intense emotions and sadness around the pregnancy and what you’ve lost. Some people are able to work through it with their partner or very close family, while others may feel that it’s not a safe space to do that, especially if they haven’t shared with other people that they’ve actually interrupted the pregnancy. It’s hard to say what is normal, as for every individual it will be something completely different.
Someone professional to work through your feelings around TFMR can be really relevant and important. Organisations like Pink Elephants are a step down from seeking professional counselling support, where you can get really good peer support to support you as you process those emotions and particularly if you haven’t shared the reality of what happened with your friends and family, then it’s even more important to reach out to somebody who is not going to judge you and will offer you compassion and support as you grieve your loss.
As a genetic counsellor you speak with people about the health of their unborn babies every day, but you’ve also got quite a specific experience when it comes to people who’ve had to terminate a baby for medical reasons.
We found that women needed support separate from a generalised miscarriage group, so we started a support group where women or couples could come and speak about their experience with others who understood and who’d been through it themselves.
Can you explain what the steps are after a diagnosis, either through NIPS or another testing mechanism?
Generally if there’s been a result on NIPS (screening test) that shows that there may be an increased chance of a problem, we would recommend you have a more diagnostic test such as an amniocentesis. For some individuals, an ultrasound will be enough to show the features that their baby may not be as healthy as they’d hoped and often doctors might make a decision at that time and let parents know. Otherwise you may go on to have a test such as an amnio.
Once an actual diagnosis has been made, I encourage the women or couple to look in a number of different areas to help them with their decision. Sometimes speaking to other people who’ve been through an interruption of the pregnancy for medical reasons can be helpful and I think some couples may need to know more information about the actual condition that the baby has been diagnosed with. So sometimes I refer back to support groups where they might be able to speak with families who have a child affected by a particular condition and then they can find out what life is like for those families to help in their decision making.
Should people seek a second opinion? How many of these diagnoses are incorrect?
It depends which screening or diagnostic test we’re talking about. It is important for the combined first trimester test which is the ultrasound with a blood test as it can have false positives about 5% of the time. When you look at NIPS or the NIPT blood test, it also is not 100% and can have false positives or distorted results. The more invasive tests are more unlikely to be incorrect.
However when this is your baby and your pregnancy it’s really important that you seek all of the information that you need. If that means you get a second opinion, most medical practitioners would be supportive of that. You need to feel assured and informed with this important decision.
Is there a general recommendation for people who want to try to conceive again after a TFMR?
It’s important to seek medical advice. For many conditions, it’s worth asking if there a chance that it could happen again. Also if there was a condition that would put the mother at risk if she had another pregnancy straight away.
In most cases it’s not necessary to wait. If periods have returned to normal, that’s generally the body’s way of saying it’s ready for another pregnancy. Of course emotionally, that’s quite a different process. Some women might want to fall pregnant very quickly afterwards, but for others, they need to take more time.
Can you tell us a little about your experiences with TFMR?
I have had two TFMRs, a miscarriage, multiple chemical pregnancies and our daughter Mackenzie pass away at 7 months old. I’ve also done nine rounds of IVF and achieved two pregnancies.
The first pregnancy after Mackenzie was for a little girl we named Bella. She was a natural pregnancy and we knew going into it that there was a 25% chance that the baby could be affected by the recessive genetic condition that affected Mackenzie. At 12 weeks and 5 days we had a CVS, which is similar to the amniocentesis but it takes a bit of the placenta as opposed to the amniotic fluid to test. About six days later we got the results to say that Bella had SMA like Mackenzie.
As much as we loved having Mackenzie with us, we already knew going into that pregnancy that we would terminate as SMA is not a condition that there is a cure for and we unfortunately had to watch Mackenzie try to breathe in the last few days of her life, and it’s not something we would ever knowingly put another child through.
The second TFMR was after a round of IVF where we transferred a healthy embryo. We had done PGD testing where they tested for SMA specifically and that came back as a 99% saying that the baby was healthy and didn’t have SMA. We also did chromosome testing and that came back with 95% accuracy to say that the baby had healthy chromosomes and no issues. We still did the NIPT test at 10 weeks to be on the safe side, because with everything that has happened to us, the numbers don’t tend to fall on our side.
Unfortunately we fell into the very very rare category where the PGD testing was not correct. That was a little baby boy we called Leo. He had a particular chromosome condition that would have severely impacted his quality of life and we just didn’t want that life for our little boy, so we had a second TFMR.
What other factors did you consider when you were making those decisions?
We considered many things but for us the main factor was quality of life. That’s number one. Everyone’s definition of quality of life is going to be different and I don’t think there’s a right or a wrong opinion on that. It’s personal to your values, your beliefs, your religion etc. For us the condition wasn’t the quality of life that we were ok with for our child.
We also looked into finances and whether one of us would need to stop working to care for him. We would have to move out of Sydney which would mean being away from our support network. We looked at treatment options. We went through a whole list. Also one factor that was an extra consideration was if we had any more children, would they be able to look after Leo when we passed away? Who would look after our baby because he wouldn’t have been able to look after himself.
Who did you talk to about this aside from yourself and your husband?
We’re quite open people and it’s part of what we’ve had to do to get Mackenzie’s Mission up and running. With Bella and her SMA diagnosis we were very open with everyone. We told family straight away with both Bella and Leo. Friends we waited a little bit, especially until we knew what we were going to do. I’ve been very open but that’s not right for everyone.
One thing we have kept to ourselves and our immediate family is what Leo’s chromosome condition was. That’s because for us SMA is terminal, so it was a little bit more clear cut and people won’t judge us as much. The chromosome condition, I didn’t want people to sit back and think what they would do in that situation. Again with Bella, SMA was part of our story, it was online and out in the open, but with Leo we wanted to protect ourselves a little bit more, and that’s ok.
What are your thoughts on what else can be done to break down the stigma around TFMR?
I think the only way that those stigmas are going to drop is by conversations and communication. It’s not the right thing for everyone and I know many people won’t feel strong enough to talk about it. I never blamed myself or felt like I had failed which I know is something that people do feel.
I knew my decisions had come from a place of love and being confident in those decisions allows me to speak about it a little bit more. Getting others to understand, and getting them to realise that just because that’s the decision we make, doesn’t mean that’s the decision for everyone. It’s not a stance on particular conditions, it’s not a stance on life, it’s just whats right for your family at that time.
How does an online community help people who are going through TFMR?
As an online community you can all relate to each other as you’re going through the same experiences. Although your journeys will be different, you’re experiencing TFMR and you can relate to each other with those joint feelings and shared emotions, which helps you to not feel so alone and isolated. You can get strength from each other.
What do people tell you are the biggest challenges they’re facing?
We are there for people after the hospital visits and conversations so we find that the biggest challenges are the emotions and the processing the information they’ve been given. Guilt is a big emotion to have to deal with, even though it’s not their fault. It’s also around the guilt of having control over a decision, even though it’s not really a choice, they still ultimately had to make a decision and that guilt is something they find difficult.
They also tend to blame themselves which is a totally natural emotion. If only I’d done something different; did I something wrong? It’s getting them to remove that blame because it was out of their control.
Time can be a bit of a challenge. Sometimes they feel they haven’t been given enough time to process their choice, and they had to make the decision and do something about it quickly because of the health of the baby or the health of the mother. Time can be limiting.
They’re worried about judgement from others and it can weigh a lot on their minds.
Does the worry about judgement influence how open people are in these groups and how much they share?
We ensure that our groups are safe, private, respectful places with no judgement, full of empathy, consideration and kindness, so people can feel comfortable to share their feelings and thoughts. Being in a group of people who are going through the same thing, we all understand how it feels and what it’s like. I think people appreciate honesty and openness in other’s posts and it helps to validate what they themselves are feeling.
Pink Elephants is introducing such a space for women and men going through TFMR. Tell us a bit about that.
Yes, we recognised how different the TFMR experience can be from a miscarriage and felt that what you go through in having to make that decision deserves its own group. So we are launching our private group tonight. I will be the moderator and admin of the group as I also have experienced a TFMR. You can find the group here.
We would like to extend a big thanks to our fantastic panellists and host:
Terri Diamond: Perinatal Social Worker at the Royal Hospital for Women who specialises in the loss of a baby or child up to 6 yrs.
Katie Ellis: Naturopath and Nutritionist who specialises in natural fertility, family, and women’s health care. www.genea.com.au
Rachael Casella: Mum to angels Mackenzie, Leo and Bella, Rachael has campaigned tirelessly since the loss of her first daughter Mackenzie at 7 months to a rare genetic disorder, to broaden the scope of prenatal genetic carrier testing in Australia. Her book Mackenzie’s Mission has just been published. Website: www.mylifeoflove.com. www.mackenziesmission.org.au
Anna Kratovil: Anna joined Pink Elephants in 2018 as one of our first Peer Support Ambassadors so she could help support other women and families going through early pregnancy loss. Discovering that this was her new path, she is now completing a double degree in Psychology & Counselling, and is also now our Peer Support Manager.
Liz Gosch: Corporate Communications Manager at Genea