S1 E12 – How Parents Heal after the Death of a Twin

One the final episode of Season One of Double Happiness Multiplied we discuss the different avenues people take to address their grief when things don’t go the way they hoped during their multiple pregnancies.

Alexa Bigwarfe tells us how she turned to advocacy to help her heal following the passing of one of her twin daughters, just two days after her birth.

Scott Beedie gives us a dad’s perspective of the emotional struggle and turmoil he experienced when he was told one of his twin’s hearts had stopped beating t just 21-weeks’ gestation.

And, Psychologist Dr Gretta Little shares some advice on recognising when it’s time you need to get some professional help to deal with your emotions.

Joy and Sorrow

We’ve spoken about the joys and the sorrows of multiple pregnancies throughout Season One of this podcast, and it’s clear each and every person who’s been touched by multiples find their own way to face their realities, whether it’s coming to terms with carrying more than one, two, or three babies or finding out that you won’t be taking one or both of your twins’ home.

Alexa’s Story

After Alexa Bigwarfe’s twin girls were born, she was certain the medical system would fix her daughter who was extremely affected by twin-to-twin transfusion syndrome, sadly Kathryn passed away just two days after she was born. Her twin sister Charis had a long journey in the NICU, which saw Alexa turn to advocacy to come to terms with the loss.

“In a nutshell, I started blogging both about my grief and about twin-to-twin transfusion syndrome,”

“I started interviewing other parents and talking with them about their stories, and what I found was that so many situations were so similar to mine,”

“Their doctors were either nonchalant about it, never mentioned it, didn’t give them all the information,’’ says Alexa.

Do your Research

During her research, Alexa found that there are a significant number of babies born prematurely between 26-and-30 weeks because of twin-to-twin-transfusion syndrome, which means they’re impacted by all the issue that comes with being pre-term.

“I wanted to really make some noise about it,”

“In the year that I was looking at the research, I found out that more babies died annually from twin-to-twin transfusion syndrome than SIDS,”

“We couldn’t change our story but potentially if someone else got the information in time then they could change theirs,” Alexa says.

The Advocate

It wasn’t long before Alexa found herself acting as an advocate for mothers. She says with doctors being so busy, mums and dads carting multiples have to be their own advocates and their own source of information,” she says.

Alexa admits she never like being the negative person but now if she comes across someone who is pregnant with identical twins, whether she knows them or not, she gives them information about TTTS.

“I say to them, I don’t want to scare you but I’d rather you be scared than go through a situation like I did,”

“I tell them about TTTS, and I tell them where the best resources for information are and I tell them where to find the questions to ask their doctor,

“And I say if your doctor is unwilling, or can’t find answers to these questions, I beg you to go and find another doctor immediately,” insists Alexa.

Purpose

Alexa admits she’s not deterred by the anger from other people when she’s sharing information. She says she feels it’s her purpose to inform people and try and save others from the same heartache she experienced.

“I’d much rather someone be terrified right now and be educated, and aware, and not ignorant,”

“Unfortunately, in our situation by the time they were diagnosed they were so far along that it makes it more difficult to do things to help them,” says Alexa.

Scott’s Story

Scott Beedie was also forced to face a situation he never imagined. He was excited by the news that his wife Joanne was carrying twin boys. That excitement turned to disbelief when one of the boy’s hearts stopped beating.

He says if it wasn’t for his family travelling from overseas to help out he wouldn’t have coped as well emotionally as he did, and even at times, he didn’t cope very well.

“You know it was going well up until you know 15-weeks when we had scans, they were all looking very positive, the obstetrician was seeing everything she wanted to see, but when we went for our 18-week scan we were already at stage 3 twin-to-twin transfusion syndrome,”

“That was quite a shock, we had turned up to that scan expecting another good one and we hadn’t been aware of twin-to-twin transfusion risk,”

“It moved very quickly with Joanne having surgery the next day,” recalls Scott.

Waiting

An anxious week-long wait followed before another ultrasound was conducted. Scott says they received good news, and it looked like the fetoscopic laser surgery had worked. The scan showed both babies had corrected in terms of liver size and the allocation of fluid.

“But unfortunately, when we went for the scan two-weeks after the surgery one of the twins had passed away,”

“That’s a confusing situation because you do suffer grief but you haven’t met your baby,”

“So, it’s quite an abnormal situation, why do I feel emotions for someone I’ve never met?” says Scott.

Joanne went onto immediate semi-bedrest to try and give the second twin the best chance.

“When we went for scans after that I didn’t look at the screen, I just listened to hear that everything was fine with the surviving twin. I didn’t want to look at the screen and see the twin we had lost,” admits Scott.

The Birth

Joanne was on her own in her hospital bathroom when the babies were delivered. Scott says it happened very quickly, there were no doctors there and essentially Joanne caught the babies.

“I had just gone home from the hospital for the evening and I got a call saying it’s happened come in, and I came in and Joanne was clearly in shock,”

“It’s quite confronting, what a 27-week gestation baby looks like. Even if you’ve seen pictures you can’t imagine how small they actually are,” says Scott.

NICU

As Scott recalls the 13-week journey through the Neonatal Intensive Care Unit was exhausting. He admits that having a baby born so early makes it difficult to create the usual parent/baby bond.

“And, you do have to go back to work, you may have siblings at home, which is a challenge,” says Scott.

Archie

Scott and Joanne’s son Archie also had his own NICU journey. It was a confusing time for him, going from expecting to have two brothers joining their family to being told only one would be coming home from the hospital.

“Our elder son was saying where’s mummy gone, why has she disappeared because for three-months she was out of the house for 8-hours a day,”

“You know, he was only two-years-old at the time, but they can pick up the emotional strain you’re undergoing and it has an impact on them”

“So, you have to sort of put on a face and make sure they can get some time with you and you make it a brighter environment than you’re actually feeling like being in,” explains Scott.

Reaching Out

Having preterm babies and dealing with the loss of a baby from a multiple pregnancy places an enormous strain on your family unit. Psychologist Dr Gretta Little says there are some clear signs to look out for that indicate you probably need to get some help dealing with your emotions.

“There’s very good research that shows depression and anxiety in mothers, both antenatal and postnatally, impacts infant development across all domains,”

“So, cognitive development, emotional development, physical development,”

“Mum’s mental health, it’s really important for her, it’s also really important for the children,” says Dr Little.

The Dad’s

As Dr Little explains, there isn’t any good data on Dad’s mental health, however, it’s widely documented that the levels of stress go up significantly for dads of multiples.

“They’re so much more engaged in the process and the care of the infants that I think it’s fair to assume that mental health becomes a family system issue,”

“So, if dad’s not travelling well that’s going to impact the mum and the children,”

“Therefore, it’s really important that everyone in the family is supported to get enough sleep, eating well, being able to engage in pleasurable activities that don’t involve parenting, that’s important for everyone,” says Dr Little.

Warning Signs

Feeling down for a period of two-weeks with no pleasurable feelings is a warning sign, according to Dr Little. Also, some other signs would be:

  • Feeling very anxious or worried.

  • Not getting good quality sleep.

  • Feeling stressed all the time.

  • Feeling like you’re not coping.

  • Having a sense that something bad is going to happen.

  • A feeling of dread.

  • There might be feelings of panic, racing heart, finding it hard to breathe.

Abdominal Breathing

Dr Little says abdominal breathing is a really good way to calm yourself down if you find anxiety or worry is taking over.

She explains that the easiest way to do that is to:

  • Do the longest, slowest out breath you can do through your nose.

  • Then, the next breath in will be deeper.

“If you do three of those, and if you take time throughout your day to stop and take three deep breaths, say at breakfast, lunch, and dinner, it just reminds you what a deep breath feels like,” instructs Dr Little.

Dr Little recommends an app called ‘Mind the Bump’, which has mindfulness meditations for mums.

“If we’re anxious our minds tend to be in the future imagining bad things that can happen, and if we’re depressed we tend to be in the past being sad or regretful,”

“So, if we can bring our mind back to the present moment it gives us a break from some of those more negative thoughts,” says Dr Little.

KEY POINTS

  • Abdominal breathing is a really good way to calm yourself down if you find anxiety or worry is taking over.

  • Bringing your mind back to the present moment by practising mindfulness gives you a break from negative thoughts.

  • Do your research and demand answers to your questions.

  • Twin-to-twin transfusion syndrome effects monochorionic pregnancies.

Season Two

Thank you for listening to Season ONE of Double Happiness Multiplied.

I really hope you’ve enjoyed listening and you’ve found the information invaluable.

On Season TWO, we’re talking about taking your babies home and what to expect in their first year.

I hope you can join me then.

Until next time.

I wish you Double Happiness Multiplied.

 

RESOURCES:

Double Happiness Multiplied

www.doublehappinessmultiplied.com

Helping Little Hands

Joanne & Scott Beedie

https://www.facebook.com/helpinglittlehandsAustralia/

http://www.helpinglittlehands.org

hello@helpinglittlehands.org

Alexa Bigwarfe

Never the Same – Families Forever Changes by Twin to Twin Transfusion Syndrome

https://www.amazon.com/Never-Same-Families-Transfusion-Syndrome-ebook/dp/B01MZ52LH0

https://www.amazon.com.au/Never-Same-Families-Transfusion-Syndrome-ebook/dp/B01MZ52LH0

Dr Gretta Little

Psychologist

http://www.heliospsychology.com/

 SANDS

Miscarriage, stillbirth, and newborn death support.

http://www.sands.org.au/

Podcast music by:

Catherine Ashley Harpist

www.facebook.com/catherineashleyharpist

www.catherineashleyharpist.com

www.facebook.com/waharpcentre

www.waharpcentre.com.au

Produced by:

Stuart James

Soundfield Studio

http://www.soundfieldstudio.com/

Voiceover:

Louise Rowe

https://www.linkedin.com/in/louise-rowe-88aa5a95/

About the author, Sally

✨🌸Hi, I’m Sally Barker. I’m a Pregnancy & Birth Trauma Coach, Journalist, Podcaster, and Author.✨🌸

🦋👯‍♀️First and foremost, though, I’m the proud Mamma of identical twin girls.👯‍♀️🦋

2 Comments

  1. Alexa Bigwarfe on 03/07/2018 at 4:01 AM

    Thank you so much for sharing our story. xo

  2. Sally Barker on 05/09/2018 at 12:59 AM

    Thank you for sharing your story with us. You’re amazing!

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