On episode Nine, of Double Happiness Multiplied, we honour the families who sadly didn’t get to take one or more of their babies’ home.
Alexa Bigwarfe shares her story of grief following the loss of one of her twins, due to twin-to-twin transfusion syndrome.
Psychologist Dr Monique Robinson talks about the importance of grieving and reaching out and speaking to others who have experienced the loss of a multiple.
And, Joanne Beedie tells us of her devastation at being told the heart of one of her twins had stopped at just 21-weeks’ gestation.
They’re known as Angel Babies. They’re the precious souls who didn’t make it into the world alive, or they were only here long enough to exhale a few short breaths of love before passing away.
The sad reality of multiple births is that compared with singletons, babies from multiple pregnancies have a substantially higher rate of perinatal death. This higher rate of loss is largely due to preterm birth.
It’s not uncommon for one or two babies from a multiple pregnancy to die Inutero and the more embryos you have the more likely you are to have a loss.
The emotional pain and the strain on the family unit after losing one or more babies from a multiple pregnancy is undeniably excruciating.
Alexa Bigwarfe was has lived this very reality. She was diagnosed with twin-to-twin-transfusion syndrome when she was 20-weeks’ pregnant with her identical twin girls. By the time the condition was detected, the disease had progressed to stage 3, which made treatment options less effective.
“There was emotion overload just all the time, and I wanted to be happy and I wanted to have faith and believe, and I still believed when they were both born and they were both alive, I still believed the medical system was going to fix her, that it was still going to be okay,”
“So, when they told us it was time to turn off the machines, I didn’t believe it,” says Alexa
Alexa explains how difficult it was to try and grieve one child while she had another one who was still trying to survive. She says the hardest part was trying to bond with her surviving twin.
“It was really difficult to bond with her for multiple reasons, I didn’t even get to hold her until she was about a week old, and then I was scared of bonding with her because I wasn’t sure that she was going to live either,” admits Alexa.
Alexa explains that she understood the pain that comes with the loss of a baby but she just couldn’t understand the whole empty arms concept because her arms weren’t empty.
“So, then I would feel guilt that I felt so sad because at least I had one,”
“And I had multiple people tell me at least one came home,”
“Just don’t say that, don’t say that to somebody who’s lost one of their twins,” she says.
Coming up to the anniversary of the birth of her twins, and then the passing two days later of one of the babies, Alexa had time to reflect on what is and what could have been.
“To be honest with you, if she had survived in the state that she was in, our lives would have been really difficult,”
“So, in some ways, I can look at it as a blessing that she was released from this world because when we talked to the cardio specialists they told us that at a minimum she would have to go through three, potentially four open heart surgeries through her life,”
“We didn’t know what level of brain damage she had suffered due to the fluid on her brain, her lungs were all kinds of underdeveloped because of all the fluid that had grown in her abdomen, just all kinds of things,” explains Alexa.
Grieving is a natural process following a loss, however, Alexa admits that with two small children who needed her, and a baby still fighting for her life in hospital, there simply wasn’t time.
“I never had that opportunity to spend two-or-three days in my bed just crying, and trying to get over it, and just being miserable like you want to do when you’ve suffered that kind of loss,”
“I didn’t actually get to grieve Kathryn until months later when we were home from the hospital, and things were getting more normal and I knew the Charis was going to be okay,” says Alexa.
As Alexa explains, it’s a battle of emotions when wanting to be happy for the life of your baby, while grieving the loss of another.
“It’s difficult, it’s a constant bittersweet sensation,”
“When Charis went to her kindergarten orientation, I told the teachers that she had had a twin sister,”
“It wasn’t because I wanted them to know I had twins and only one is here, but more than anything I wanted it to kind of be a normalising thing because it’s not unheard of for Charis to be like ‘I have a baby sister named Kathryn and she’s dead’,” says Alexa.
Alexa is now at the point where a lot of things are easier, however, she admits that was one of those moments, those big moments when you think there should have been two, and you should be deciding whether they’re in the same class or not in the same class.
Special occasions and the holiday season can be a difficult time for people who have lost a baby.
“Each year we put up the Christmas tree and I have a lot of angel’s wings and memorial ornaments for her, and I fight that urge to hang up a stocking for her,”
“I fought the urge for years to not send out Christmas cards that included her name on it,”
“I still celebrate both of their birthdays on the tenth, and we always have a cupcake for Kathryn,”
“My husband grieved very differently than I did, but on the twelfth, I made it a point to celebrate her life on her angel day, the day she passed away,”
Alexa created Kathryn day, and each year they do something different in memory of her, in honour of her, to give back to their community on her behalf.
“I want to celebrate her life and I want to do something good in her memory,” says Alexa.
Telling your children one of the babies won’t be coming home
Oftentimes, the worst part of a situation like Alexa’s is telling your children that one or more of their babies won’t be coming home. She says her daughter Ella was 23-months old when the girls were born and the extent of what she understood was that mummy had babies in her belly but she couldn’t grasp the concept that one of them had died.
“My four-year-old son though, he was completely different, he knew what was happening, he knew there were two babies in my belly,”
“He would ask me questions about the babies like ‘how are the babies going to get here are you going to split them out’?”
“He was very aware that he had two baby sisters that were going to come join us at some point in time,” Alexa says.
When Kathryn died, Alexa and her husband came home from the hospital and told their son what had happened. She says he was really angry at them for a while.
“He said, you told me there were going to be two babies, why am I only getting one?”
Alexa felt it was important to be very open with her children about Kathryn and what happened. She believes it was a way for her family to grieve and heal, however, she says when it comes to children you can’t expect them to grieve in the same manner as adults.
“In reality, they don’t feel grief and fear the same way that we do because they don’t really understand death to the degree that we do,”
“But they do have tonnes of questions, he wanted to know where is heaven,”
“This is when my faith really struggled because it was really hard for me to tell him all these things that all of a sudden seemed really silly to me,” admits Alexa.
Whether it was right or wrong, Alexa says as Charis grew up they have made it a point to keep her sister very much a part of her life. She admits there are some days where she wonders if they have overdone it.
“We went on a field trip not that long ago, she’s in kindergarten, she was walking a little bit ahead of me and I hear her tell her friend, ‘I’m not scared of dying’,
“Her friend just looked at her, and then she said 'my baby sister’s in heaven and when I die I get to be with her',” says Alexa.
Psychologist Dr Monique Robinson says the one thing she sees the most with grief is that other people don’t know what to say. She says they often feel they need some magical sentence to make you feel better and their awkwardness can be really isolating, so it’s important to understand the grieving process.
The most important thing is the stages of grief.
Disbelief & Denial
Dr Robinson says she sees it all the time with grief, that there is initial disbelief that they can’t believe it has happened.
“Or, even the denial of it hasn’t happened, there’s going to be a way to fix this, or they’ve got it wrong,” she says.
Unfortunately, when you’re in a situation like Alexa's, the advice of not making any decisions initially afterwards because the shock and the flood of emotion make it very difficult to think clearly, isn’t possible.
“Often, you’re asked to make a lot of decisions in that early time where really you’re not very well equipped,”
“Sometimes I’d love to say you’ll think about that later but if you’re making decisions about what’s going to happen with the baby, you’re forced into that very quickly,”
“If it’s the loss of a twin and you’ve got the other twin, it’s all those sorts of things before you’ve had a chance to come to terms with the grief,” says Dr Robinson.
Anger & Guilt
Then you go through the anger, feeling like who’s fault is it? As Dr Robinson explains, some people are much more programmed in general to what’s called 'externalising behaviour', which is things that happen to them are caused by others.
“Even worse, if it’s the guilt of this is caused by me,”
“And then bargaining comes into that guilt of if I hadn’t have done this, or I’ll make sure I’ll live a really good life from now if only the baby will survive,”
“You know that feeling that I’ve got to make a deal somehow to try and get this to work out the way I want,”
“It’s a control thing, and it’s not helpful,” Dr Robinson says.
Depression & Sadness
After guilt, there’s depression and sadness, the real depressed mood and the low mood before you eventually get to the acceptance stage.
“It’s a big generalisation but men in our society just aren’t trained to talk about their feelings … it’s very difficult for men,”
“Often when I see couples, the woman will be doing all the talking and the guy will be very quiet,”
“That’s something to be really careful of is that if talking about it and thinking things through doesn’t come that easy, is to really avoid things that make it worse, and be really careful they’re not letting it out in different ways,” warns Dr Robinson.
Dr Robinson says because women often have more of an emotional release early on, they can be at the acceptance part of the grief earlier than their partner,”
“You also hear men often talking about the fact that the pregnancy isn’t happening to them there’s this distance,” she says.
When you’re going through a multiple pregnancy, many men confess to feeling like a bystander, that in some way the mother has more control over the situation because it’s happening to her, the doctors are speaking to her, the medical attention is on her, and men feel like they’re not involved.
“It’s not up to them to have bed rest in order to make sure the babies are safe,”
“The woman can lie on the couch, she can do something about it, the man just has to worry about what’s happening and they don’t have that same sense that there’s some control,” says Dr Robinson.
With all this, there’s a big financial impact, especially if the mother was planning to go back to work after six months or so, that might not be possible anymore.
“So, all those initial plans with the finances are going to suddenly need to be revised,”
“And, it’s often men who have to deal with those practical financial aspects of things while also grieving and going through the same stress and the same worry,” explains Dr Robinson.
Siblings and grief
Dr Robinson says that when it comes to grief and other children it’s important to target the information to their developmental stage.
“You often see people talking about our angel babies, the baby who’s in heaven,”
“Some women very much involve the baby who’s passed away in family conversations but that’s not always easy and may attract some negative attention from others,”
“I know one woman who, when she talks about her children, she talks about her three children even though one of them passed away at birth,”
“For her, she wants to include everyone in the family, for other people looking at her they think that’s a bit weird,” says Dr Robinson.
The smoothest path to healing with most people is to be open with what’s happened.
Dr Robinson warns that being an ostrich with its head in the sand isn’t an effective strategy for healing. Just the same as bottling things up or keeping things to yourself and not acknowledging what has happened, thinking you just want to move on not think about it, is not always the quickest path to heal.
Having a script that you rely on that you’ve repeated enough times that it doesn’t cause the emotional distress is a really good thing to have, Dr Robinson says it doesn’t have to be elaborate, just a prepared statement that says something along the lines of:
“Yes, I was having twins but unfortunately one of the babies didn’t survive but I'm so grateful to have this twin,”
“Rather than either avoiding people because you don’t want to answer those questions or feeling like you’re going to break down in front of strangers when you get asked those questions,” says Dr Robinson.
When it comes loss and grief, Joanne Beedie says if it wasn’t for her family, she doesn’t know how she would have made it through the worst possible experience of her life.
“The first trimester couldn’t have gone any better if we’d tried,”
“Our screening test came back and we had the best numbers our obstetrician had ever seen for identical twins for years,” remembers Joanne.
With their hearts full of good news, Joanne and her husband went away for Christmas with their toddler, Archie, excited at the idea of having identical twins joining their family the next year.
“We got into early January 2016, and at our anatomy scan, at the halfway mark, it just all went wrong,"
“Within 24-hours we had been rushed over to the specialist team at King Edward Memorial Hospital, as we’d been diagnosed with twin-to-twin transfusion syndrome,”
“After going from winning the lottery, against the odds of having identical twins, we somehow lost that ticket and ended up in this horrible situation,” says Joanne.
The situation was quite severe. The syndrome had come on aggressively and acutely, and both babies were at risk. Joanne explains that one baby (Logan) was incredibly small and had no amniotic fluid, and the second baby (Lewis) had too much fluid, which had put pressure on his heart and all of his other organ systems.
They were operated on the following day with fetoscopic laser treatment and were told to wait to see what happened.
“A week later, we had a good scan, the doctor was happy with the progress the boys had made in that week,”
“So, we started to think that things were okay and we’d hit a hurdle and I’d just have to take it easy for the pregnancy and we’d have to keep an eye on it but we’d be alright,” recalls Joanne.
A week later, however, things took another turn for the worst, Joanne and Scott were told that Logan's heart had stopped beating.
“They didn’t know why, which has always been a bit hard to live with because the doctors felt the surgery had gone well, and from the previous week’s scan the boys looked like they were doing okay,”
“And in the end, Logan just couldn’t do without the support his brother Lewis had been giving him and his little body couldn’t cope,”
“It’s just one of those days I will never forget, my husband will never forget either,”
“I don’t think we’ve ever cried as hard as we did that day,” Joanne says.
Joanne recalls that through the confusion and shock at the news of Logan’s passing, she started asking what would happen with Lewis. It was at that point she was told her pregnancy should continue on to be safer and healthier, and that she should carry Lewis to term.
“I just then had to accept that I would have to carry Logan with Lewis for the remainder of the pregnancy, which is a very peculiar feeling to carry one child who is alive and carry another child who has passed on,”
“Seeing Logan in the scans every week from that point, at first I found that a very difficult thing to grasp, but in the end, I took some comfort that I still had a little bit of time with him and that somehow he had looked after his brother,” Joanne says.
Things settled down for a few weeks until about 25-weeks’ gestation, Joanne noticed that she hadn’t felt Lewis move much one day. A sugary drink and a rest failed to raise any movement, so they headed into the emergency department.
“I was told the amniotic fluid around Lewis had substantially reduced and we’d be lucky to get t 30-weeks,"
“After being told you’ve lost Logan but you’ll get to term, to then be told you’re going to have a baby by 30-weeks,”
“It was just being slammed back into a topsy-turvy world,” says Joanne.
At just 26-and-a-half weeks, Joanne was back in the hospital in a panic after thinking her waters had broken, but she was again reassured everything was okay. However, she was given a dose of corticosteroids to help the development of Lewis’ lung in preparation for his imminent pre-term birth.
Just two nights later, just after her husband Scott had left for the evening, Joanne woke to severe back pain.
“I got into my bathroom and realised it was Lewis coming, and I caught his head in my hand whilst hitting the emergency button for the midwives,”