Frequently asked questions (or those you may be afraid to ask) answered by Rachael Casella, a woman who has experienced two TFMRs and Dr David Kowalski, Obstetrician and Gynaecologist.
When diagnosing the abnormality, are medical professionals able to tell you what the condition is or just whether you are high risk?
RC: Using NT and NIPT, medical professionals can determine whether a baby is a high risk for particular medical conditions. However, these tests are not diagnostic so you will be referred on to have a CVS or amniocentesis to confirm what (if any) condition the baby has. Some conditions do have a scale of severity and are dependent on the child but from my understanding they cannot tell you to what degree the child is affected.
How do you make the decision? How do I know what is the right decision?
RC: My husband and I made our decision together initially, before speaking to others. We looked at a number of factors but for us the most important question was, “What would the baby’s quality of life be?” This was our number one question. We knew we would love a baby no matter what challenges they had, but what would be the right thing for the child? Would they struggle significantly? We looked at what treatments were available for the conditions they had and in our case there were none. We also looked at our support network and finances knowing this would change our life in every single way.
Despite our decisions we also know and respect others who have chosen to proceed with pregnancies where the child has a condition. There is no right or wrong answer as there are so many factors to consider. No two situations will have all the same factors, as no two families are the same. Only you will know what is the ‘right’ decision. I know the decisions we made were the correct one for us, but they still hurt.
DK: I feel that if a couple knew they would be available and able to care for someone for that person’s entire life, the answer might be different. We know, unfortunately, that this is impossible. Once the parents themselves die, the responsibility for that care may then fall upon a sibling – a child who is young or may not even be born yet. It is a difficult consideration to place that duty upon another person.
What are your legal rights in making that decision?
RC: In Australia you have rights over your body. Abortion/termination law in Australia varies between states and territories. However, as a general rule abortions/terminations are legal in all states and territories in Australia up to a certain number of weeks (the number of weeks is where they vary), from that number of weeks you will need the approval of two doctors in order to terminate. In the presence of a genuinely suspected condition, you will always find medical support for your decision.
Can someone help me make my decision?
RC: No one can tell you what decision to make, this is a decision for the woman/parents. That being said, you are not alone. Depending on your circumstances you can speak to family or friends. You can speak to medical professionals who can give you information on the condition, treatments and/or the process for terminations. There are also many support organisations such as Pink Elephants Support Network who can support you. You can have as little or as much help from people as you want. You are in control.
Is the procedure the same as an abortion?
RC: Technically speaking, if you elect to have a D&C, the procedure itself is much the same as an abortion. However the term ‘abortion’ itself, while perhaps medically correct, is likely to be quite confronting for parents and may also result in a lack of understanding from others.
Are you under general anaesthetic?
RC: If you have a D&C you will likely be put under a general anaesthetic or sedation. Obviously if you have chosen to give birth, you may do so without intervention, or you can opt for pain relief or even an epidural if needed. In some cases, where a mother’s life might be at risk, for example, pre-eclampsia, pain relief may be indicated in order to keep your blood pressure down. Generally whatever is considered to be most beneficial to you, will be offered.
At what gestation can you deliver the baby as opposed to having a D&C?
RC: From about 14 weeks gestation you will likely be offered a choice as to whether you would prefer a D&C or to induce labour. Unless medically indicated, it will be a personal choice for the couple. Late term TFMRs are usually defined as being from 20 weeks onwards but they only account for approximately 5% of all terminations. These late term TFMRs are usually due to fetal structural abnormalities and as such, they remain undiagnosed until the 19 to 20-week fetal anatomy scan. In late pregnancy TFMRs, you will still have a choice as to how you choose to proceed. Many women will opt for labour and delivery, however a D&E can still be performed, bearing in mind you will likely need to use a cervical preparation or softener to relax the Cervix and allow easier entry for the medical practitioner.
Does the baby feel any pain?
RC: This was a question I asked multiple times through both of my TFMRs. I didn’t care about the pain I would feel, all I cared about was my baby’s pain. I was always told the same thing, that the baby would not feel any pain. The baby would know nothing but love and warmth. It was explained to me that when I was being given the general anaesthetic the baby would be affected by this also, falling asleep and never waking up again. The understanding is the pathways involved in mediating pain have not developed yet.
What happens in the cases of twins?
DK: This can be a tricky area. In the event where there is a confirmed abnormality in a twin pregnancy, the affected fetus can undergo a procedure termed ‘Selective Reduction.’
This is a medical procedure as surgery is not an option. In this case the fetus who is diagnosed with a condition has an injection to end its life, so the other can survive. However, timing is the issue. The later a termination is performed, the safer it is for the remaining fetus. This can have a significant psychological impact on the mother and must be very carefully considered. For example, a cardiac defect may be identified at 20 weeks, and the medical termination deferred until 34 weeks. This somewhat brutal option protects the other fetus to an extent but warrants careful consideration and counselling.
If it is performed before 16 weeks it is recognised that there is an approximate risk of 7% of harming the remaining fetus and a 7% chance of that twin delivering before 32 weeks.
Certain forms of twins require a more specific approach and would involve ensuring that any potential blood circulating between both foetuses, is interrupted before carrying out the termination.
Did you experience any physical after effects?
RC: The after-effects of the TFMR for me were mainly bleeding for a couple of days, small cramping or twinges in the uterus, hot flushes and my breasts leaked for a few days. This all mostly occurred in the first week after the surgery. A few days after the surgery I had a hormone crash where I cried and felt very vulnerable. It took about four weeks for my period to return and that period was strange, it went for longer than usual, but I tried to just be kind to myself, trust my body and let myself rest.
Does having a termination for medical reasons affect your future chances of pregnancy?
DK: In theory, surgical terminations have a small attended risk of affecting fertility in two ways. If the procedure was carried out too aggressively, or had been done multiple times, it could theoretically affect the ability of the cervix to hold a pregnancy. This may be addressed by vaginal progesterone, used daily. Less often, a small operation may be performed at around 14 weeks to protect the cervix.
Another risk is the formation of adhesions within the uterine cavity following a surgical termination. This can usually be treated successfully via a surgical procedure by an experienced gynaecologist.
Does it have to be done by a certain gestation?
DK: No, a TFMR can be performed at any gestation.
Does it cost to have the testing and the D&C?
RC: I have had two TFMRs – one in the public system and one in the private which was performed by Dr Kowalski. In the public system the CVS, all ultrasounds and the TFMR through the day surgery were all free although we paid privately for the NIPT test. In the private setting you may need to pay for the NIPT, the CVS or amniocentesis, the anaesthetist and surgery.
Do you feel that there was judgement from staff at the hospital?
RC: I have never felt an ounce of judgement from any medical professional along our long journey. The medical professionals are just that, medical professionals. They know better than anyone the future faced by a chid with a condition. They know that your child is very loved and very wanted. They know that your decision was hard and that what you are going through right now is painful.
How much guidance and support did the medical professionals provide?
RC: During the process, in both the public and private space, we felt supported, cared for and we knew if we had questions, they would do their best to answer them. Following the TFMR we had different support depending on whether we went public or private. In public they were beautiful during the process but once the surgery was done and we were sent home we didn’t have much contact. However when we went private, we had follow up contact and support from our private obstetrician.
Do you think you received enough support afterwards from care providers in terms of mental health?
RC: Unfortunately, in my experience there is definitely not enough support afterwards from care providers in terms of mental health. This is something that is very limited. Once the procedure is done and you have your follow up from your medical provider, there is not much more to follow. This is especially so with TFMR as it’s spoken about so little in society. This is why support networks like Pink Elephants and resources like these are so important.
What happens to your baby after the D&C or delivery? Can you take your baby home?
RC: After a TFMR that is done by D&C, your baby will be treated kindly and with love. It is likely a sample will be taken for testing and your baby will be cremated at the hospital. Arrangements can be made if you wish to have your baby’s ashes. If you have a TFMR via induced labour it will likely be that you are further along in your pregnancy. If this is the case you will be offered time with your baby and asked what arrangements you would like to have done.
Do you know some easy to understand resources for family and friends to help them understand?
RC: Pink Elephants Support Network have a number of Emotional Support Resources. One is titled ‘The Turmoil of Termination’ which may help both yourself and others around you understand TFMR better. In addition, there are other resources which can help you through this process and also help others to know what to say to you such as ‘Use Your Words’ and the other is ‘A Friend in Need’.
How do you tell people that it was a TFMR?
RC: Personally, we were just honest with people. We had previously told people when we had miscarried a baby so when we were faced with a TFMR we once again told people. We wanted to be honest because we knew it was something that happened every day, but people didn’t speak about enough. So, we chose to start that conversation around us. We were completely honest with our family but for those we were less close to, we chose not to tell them what the illness was. We decided to keep that for ourselves so people couldn’t decide whether our decision was ‘right or wrong’ depending on if they saw the illness as being ‘serious enough’. What you tell people is completely up to you. Some people may not be in the position to be honest due to their family religion or beliefs. However in our case, we received positivity and understanding.
Is it better to just tell people I miscarried?
RC: Telling people they suffered a miscarriage is the number one way people communicate this type of loss to others. This is an option if your situation or your emotions do not allow you to tell others about your TFMR. It is a legitimate option. The only comment I will make is that I have been told that those who tell others they had a miscarriage can take longer to process their loss as they have not been able to communicate the process or the decision they had to make.
Do people criticise the decision?
RC: I have been very open about our losses and our two TFMRs. The majority of people, 99%, have been very understanding and supportive. I rarely come across criticism. Those who have criticised me usually have healthy children and have never been in the position, so I tend to not pay attention. Until you have been in the position, with all the information in front of you, you will never know what you would do. The more certain you can be about your decision the less criticism from others can hurt you.
Is it harder to recover emotionally from a TFMR than a miscarriage?
RC: In my experience and those of people I know, I would have to say yes it is. I think that is because with a miscarriage there is nothing you could have done to stop it; you weren’t involved in the process. Whereas with TFMR you make the decision, so in some ways you feel responsible despite the illness not being your fault whatsoever. Most people I know say even twenty years later that they still feel guilt about it despite knowing it was the right thing to do and not having any regrets. The emotions that come with it are complicated.
How do you grieve the baby?
RC: There is no right way to grieve a baby. For us, we made the decision to find out the gender of our babies and we named them. This might not be the best way for everyone but for us it felt like we were making a space in our life and in our memories for them. We also focused on the fact that the decision was made from love. It was the ultimate act of love, to take on the suffering rather than making my child feel any pain.
When can you try again after for a baby after a TFMR?
RC: You can ovulate as early as two weeks after a TFMR however, I would recommend having a first period as your HCG is likely to still be showing you are pregnant until this time. Your body is incredible in what it can go through but it is important to give it time and love.
Rachael Casella – Rachael and her husband Jonny have had a heartbreaking journey, losing their daughter Mackenzie at 7 months old to a rare genetic disorder called Spinal Muscular Atrophy (SMA) type one. Further, their next natural pregnancy resulted in their daughter Bella also having the condition, while most recently, their son Leo was found to have a separate chromosomal issue – both pregnancies resulting in termination. Rachael and Jonny are still desperately trying to conceive a healthy baby while also raising awareness of SMA and campaigning for greater access to genetic testing via their charity Mackenzie’s Mission.
Rachael’s book Mackenzie’s Mission was released in June 2020.
 Children by Choice, 2019, Australian abortion law and practice, https://www.childrenbychoice.org.au/factsandfigures/australianabortionlawandpractice
 O&G Magazine, 2020, Abortion Vol 20 No 2 Winter 2018, https://www.ogmagazine.org.au/20/2-20/feticide-and-late-termination-of-pregnancy/
 O&G Magazine, 2020, Abortion Vol 20 No 2 Winter 2018, https://www.ogmagazine.org.au/20/2-20/feticide-and-late-termination-of-pregnancy/