Coping after recurrent miscarriage

In this webinar, Mandy Rodrigues, MA, Clinical Psychologist, discussed recurrent miscarriages and how to cope with them.

If we look at miscarriage in general, infertility impacts 1 in 6 people, but miscarriage is 1 in 4 people. Recurrent miscarriage, and I pray a lot of you don’t fall into that category, but is 1-2% of the population, usually defined as 3 miscarriages. We’re trying very much to create awareness with the doctor, to kind to refer you to specialists before you have to go through 3 miscarriages if you’re not already there. 

I also want to say that those of you who have or are going through infertility and have recurrent negative IVFs that could also be defined, in some way, as a recurrent pregnancy loss. There is rarely closure, but I will guide you to say how we get the closure that we do. 

I’m trying very hard to get people to present sooner to a specialist, and it’s sometimes very hard like we think: ‘What if I fall pregnant naturally before?’, ‘Why do I need to go to fertility clinic?’. We do see that sometimes secondary infertility does happen after a miscarriage.

Why is managing pregnancy loss so important?

Often loss in miscarriage is only dealt with months or even later down the line. I have a strong urge to teach people, and we’re busy designing a program that says ‘Please, can we refer people after their first miscarriage?’ Firstly, the clinics often don’t offer that; but secondly, it could be we’re going through this constant grief cycle, especially if you go through this again. It’s sometimes only years later that the trauma is dealt with. 

There’s this fear of pregnancy, even if you do get a successful pregnancy, and many people say to me ‘I feel guilty, I feel anxious every day, I don’t how to deal with this, I’m worried I’m not going to attach to this baby, I’m worried about all of that’, we can manage all of that and help people cope with it.

If we have a look at this book, written by Henry Greely, it was very recent. It says that ‘The End of Sex is Nigh’. For all the males out there, I’m not saying that it’s going to stop, but in terms of infertility, it’s moving towards this trend of doing pre-genetic screening, of doing a lot of, not designing babies, but a lot of procedures that can get people pregnant. It’s moving very fast ART. However, with that, we’re getting some miscarriages, more miscarriages, more identical twins, and sometimes multiple pregnancies; so, it becomes very important to discuss this topic. 

How do parents cope? What can caregivers do to facilitate this?

It includes: 

• Negative pregnancy tests during assisted reproductive treatments or IVF
• Sometimes bad news in an ultrasound
• Early miscarriage
• Late miscarriage
• Possible prematurity
• Stillbirth
• Neonatal death

I’m going to show you a video just to show you how parents cope. I apologize if that video hurt a lot of you, I’m sure it did. Furthermore, I usually end up crying when I play some of this because I think it’s so important to hear from the actual mums and dads who are going through this. 

These are some of the quotes that grieving mums have put together. 

• One mum said: “I had to remember to breathe. Something that I had to consciously do ever since that day. Do you know how hard it is to put one foot in front of the other?”
• Another mum said, “It’s a kind of tired that sleep can’t fix.” 
• Other mum said, “Grief is baffling. It doesn’t go away, it just changes, and it changes us.” Sometimes you don’t get closure, you move on. 
• Another mum said, “I felt like I had died too, and they just forgot to bury me.” 

The following are some of the mums that I’ve seen who have gone through recurrent miscarriages. One mum, who had 8 miscarriages, sent me a voice note and said, “I felt like a human coffin.” It broke my heart. She was carrying these babies, and she just felt like you’ve all felt before. 

Every scan after my losses, all I could see was an empty womb. A stark reminder of the day my heart broke, and I cried for my angels.

It was another mum who had 4 miscarriages who said to me, “I would never kill myself as I have some hidden hope, but I needed to be punished for failing yet again.” This mum presented to me only years down the line with a complicated grief reaction, that became pathological. She stopped eating and drinking, and 14 days later, we had to put her on drugs, and it was her way of punishing herself. 

Where’s the empathy with miscarriage?

I did a study with these mums, I had to present at a Fertility Show in Africa last year, and I had to quickly do qualitative research on mums who had gone through miscarriages. This is what we came up with:

We interviewed 10 mums because we didn’t have much time and dads. The most important thing that came up was there was no sensitivity for anyone. Like the mum before, who happens to be my beautiful niece, she felt that there was no sensitivity to the way a recurrent miscarriage is handled. 8 out of the 10 said that no psychological support was even offered to them, and the staff was very uncomfortable. There was also a lack of knowledge by the staff, which you’ll hear none of from other mums.

The last one is the overall good management of neonatal loss. That’s very different, that’s a fertilized that’s going down the line, and no feedback nor guidance. The following are short clips from a couple of mums that I interviewed.

1. “Two years ago, I suffered an ectopic pregnancy. On arrival at the hospital, I was admitted into the maternity ward because that’s where all patients go. I was placed back into the maternity ward. It was full of newborns and their mums. My baby had to be removed from my fallopian tube to save my life, but all I could hear all night was the cries of the newborn babies all around me. It was so unfair and made my loss so much harder. I could hear the nurses whispering outside my room, ‘Don’t worry, there’s no baby in there, you don’t have to help the mum.’
2. “I had a stillborn baby, just over 10 years ago. It was devastating. There was no one to encourage me to see my baby to have a photo taken, or to name her. I felt heartbroken and empty and just didn’t know what to do with myself. As time moved on, I was devastated that I never got to see her or hold her, that I never got to take a photo of her. It’s now been over 10 years, and I’m still haunted by what happened to me and how it was dealt with.”
3. “Alexa was the daughter I had longed for, but she’d be the reason my story when life and death collide came to be. When losing a child, you lose so much more. Your hopes and dreams for your child, the life you imagined for and with them, also die.”
4. “We had to start planning the funeral. It was, I guess, the last thing I could do for him as a mum. There was no one else who knew him that well, and then after the funeral was done, it was hard because everyone goes on, and you feel like time has stopped for you when you’re stuck like you’ve got all these little memories together with him, and I was very, very heartbroken. Everyone else just carried on with their lives, so it was very difficult to see that no one remembered him, he meant nothing, but to you, he meant the world. I wish that I had someone to talk to about it afterwards, it was a very lonely process to go through. I’m on that, though. Tell us that it’s okay to take in every moment and remind you at that moment of all the things that you might forget to do. Take the footprints or that the nurses take the footprints, because I cherished that very much, remember his face that I took a photo of him in the morgue as well to try to remember his little face, but it was not the same, I mean it’s been gone for a few days. In the beginning, it was easier for me to talk about him. I could do it, I wanted him to be remembered, I had all these ambitions and stuff, and memories that you were going to make that makes it difficult. The hospital asks you, ‘How many kids do you have?’ and if you say you have these many kids, and you don’t include him in that, you go to your car, and you cry, and you feel so guilty for not acknowledging his life. In the beginning found it hard to speak about him, he didn’t want to talk, but I wanted to. I wanted to remember everything I kept and just speak about him.”

These moms, they’re not pictures, they’re not words to describe your loss. I’ve had early miscarriages, I had no one to talk to, I wasn’t referred to anyone, and it doesn’t matter whether you’re like some of these mums who’ve lost their babies at the end, or whether I lost my babies at the six-week scan every time, and I lost two, and then I had three negative IVFs, so I know a little bit, but these mums are phenomenal.

We run a group called the Hope Box, and if you look at my social media, the Hope Box is incredible. Mums who had miscarriages join, and no one needs to stand up and say ‘This is Mandy, I’ve lost a baby.’ No one needs to talk. We sit there together as a group with husbands, with grannies, with everyone, and we make boxes for mums who lost children and who had miscarriages. We build these little boxes and the hospital then lets us know if they’re dealing with the miscarriage, and we try to give them that and try to offer them support.

What is the Kübler-Ross Cycle of Loss?

For those of us who’ve studied psychology, it looked so simple when we studied it.

There was a loss and this was followed by this neat state of shock and disbelief, like ‘I can’t believe there’s no heartbeat. I can’t believe that I didn’t get an eight-week scan.

Then there’s bargaining, ‘What did I do wrong? How do I make sense of this? Did I maybe cause it? Am I being punished?’

Then we go through being anger. Angered is normal. We get angry at the whole world, but there’s nothing we can do.

Then we go through depression. We feel hopeless and hopeless.

According to the psychology I learned, we’re supposed to accept. No. It carries on and on. A new cycle of loss comes and it’s dashed again. So, you’re going through recurrent grief cycles all the time.

It’s not like losing a mother or a grandparent, who you have a history with and you have photographs, and you’ve got wonderful memories and you can move to that anger and through those stages, I’m not saying it’s easy if you’ve lost a parent, but I’m saying that losing a child, you’re losing a future you dreamed with your baby. It’s so much more, so we go through this kind of grief cycle.

It’s not simple. It’s up and down. Acceptance is never an acceptance. It takes to find closure, even the mums I see who had kids afterwards, you don’t forget. I want you to imagine the story of when losing a baby, you’re on this storm. Waves are crushing around you and there’s no life raft, and there’s no one to help you and you feel like you’re drowning. There’s no one holding your hand. Then, a life raft appears somewhere and you’re able to hold on to it. You’re able to just hold on during the storm, and with time you sail to the shore and the way it’s become a little bit more predictable, they become a little bit more manageable. They still come, I promise you that, but you know when they’re going to come. You learn.

What types of grief are there?

Before talking about what grief is, I want you to look at this picture that men and women, this is what they do.

Women grieving, this is hard to show and people start coping independently, but both of you have this inner child that is trying to reach out to the other person. What’s so important is that often, in a good marriage, one is struggling and the other one is strongest, so you might have your husband say ‘Well, try again’ or ‘Let’s not try anymore’, or ‘Come on.’ As soon as you start coping, what happens in a good marriage is that the men almost have permission to grieve.

It’s just a personal story, I lost my mom 10 days ago to COVID. I’m okay because this is my passion, and I’m looking after my family and my godson said to me ‘Auntie Mandy, I do not want to come out of my room,” and everyone was in the room, and he said, ‘I can’t because you’re all crying, when do I get to cry?’ This is what people are going through, what your husbands are going through, they’re thinking, ‘We can’t cope together, we can’t grieve together because one of us needs to be here and we need to hope the other one gets through.’

If we look at the stages of grief, appropriate grief it’s going to what I showed you. It’s generally, they say 6 months, but that’s not with a child, not with losing a miscarriage. It’s not because you’re grieving everything you imagined. You’re grieving your pregnancy death, your first Mother’s Day after having lost a baby, your baby’s due date, your first Christmas when you thought you would have your baby. You’re grieving into the future and it’s relentless, especially when you’ve had a few miscarriages.

It becomes complicated, oftentimes I find with loss and miscarriage, it becomes complicated it lasts longer than a year. You’ve heard some of the ladies I spoke to, it’s been 10 years down the line and they can’t talk. They spoke to me because they trusted me and they permitted me to post their talks, but it’s a heightened stage of mourning and intense sorrow. We get those who stop eating and can’t work anymore pathological grief. That becomes a problem that you can’t go to work anymore, you withdraw from the world, and that becomes something we need to manage.

Why is the grief of a baby so complicated?

• We’re grieving into the future.
• Constant anniversaries.
• Very little support.

When you haven’t lost a baby, when you haven’t been through IVFs or failures, or recurrent miscarriages, you think ‘Who’s going to understand me? What professional is going to understand what I’ve been through? Who can change the outcome? Who can make this better for me? No one and I agree, but the ways we can facilitate you dealing with two things happening at once, with constant grief and infertility.

However, we especially with the European Fertility Society and IVF Media, always say we’re stronger together.  We’re going to be an advocate for patients, for this psychological care and take that forward.

The following is what we’re trying to train staff to do. We’re trying to train staff that:

• There’s a grief cycle.

Most of you enter this journey with depression or anxiety, post-traumatic stress, sometimes marital distress, and postnatal depression because whether you carry your baby for five babies, when I carried my baby for six weeks and I did DNCs, you still feel pregnant. You wake up every morning, and you don’t want to wake up because you remember, and it exacerbates and exacerbates those issues.

We need to train staff and we’re going to do that with guidelines. I can promise you we’re training fertility staff from the ground up, with the European Fertility Society from the minute you step into a fertility clinic to the council lady, to the people in the theatre to help you get through this.

When you lose a child, you join a club no one wants to belong to, and you are also in the minority you kind of alert to join them. You want so much to fit into a world you were in before that’s got pregnancy, anticipation, and a future with your baby, and where your conversations are joyful and expectant. Then you suddenly lose your baby and by default, you initiated very cruelly into this club. You resist it and people around you don’t seem to understand and maybe whisper between themselves, not sure of what to say and they initially give support and then they move on, and they carry on with their lives. So, you feel estranged and you’re on the outside looking in and you’re withdrawing to yourself and you can’t escape the memories, and you can’t stop people from moving on without you. You feel that they have some morbid fascination when they ask questions. Never has it felt so lonely belonging to an elite club of people brought together not by choice but by the cruel hand of fate.