The excitement of finding out you’re carrying twins, triplets, or quads can quickly turn to overwhelm when the possibility of developing complications in your pregnancy arise. And, if you’re a first-time parent you have no yardstick to measure against, which may be a positive as having multiples is very different from having a singleton.
Sitting here now, remembering what it was like finding out there were serious complications developing with my multiple pregnancy, I empathise with all of you who are facing an unexpected diagnosis.
It’s during this tumultuous time that the prospect of only taking one, or even neither, of your babies’ home becomes real. You’ll search for people who have been in the same or similar situation to latch onto hope that you’re going to one of the lucky ones who beat the odds.
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 (TTTS), 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.
TTTS Twin-to-twin transfusion syndrome (TTTS) is a prenatal condition in which Monochorionic twins (identical) share an unequal amount of the placenta’s blood supply. This results in the fetuses growing at different rates. Around 70 percent of identical twins share a placenta and 20 percent of these pregnancies will be impacted by TTTS.
“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 due to TTTS, which means they’re impacted by all the issues that come with being pre-term. And, Alexa wanted to 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.
It wasn’t long before Alexa found herself acting as an advocate for mothers. She says with doctors being so busy, mums and dads carrying multiples have to be their own advocates and their own source of information.
Alexa admits she never liked 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 your answers to these questions, I beg you to go and find another doctor immediately,” insists Alexa.
Unfortunately, for Alexa by the time she was diagnosed with TTTS the condition had progressed to a stage where the treatment options were limited.
She says she’s not deterred by the anger from other people when she’s sharing information and 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,” says Alexa.
In memory of Kathryn, Alexa created a hybrid publishing company named Kat Biggie Press. Part of the profit goes towards into TTTS awareness.
Scott and Joanne Beedie share a similar journey with Alexa.
They were excited by the news that their two-year-old son Archie would have twin brothers to play with. Everything was going well with the pregnancy and at each scan, things were as they should be.
“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,” recalls Scott.
Joanne had Fetopic Laser Photocoagulation surgery the following day. It was then an anxious week-long wait before another ultrasound was conducted.
They received good news at the follow-up scan, which showed both babies had corrected in terms of liver size and the allocation of fluid.
Another week later they went for another scan. It was then discovered that one of the boys 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?” explains Scott.
Joanne went onto immediate semi-bedrest to try and give the second twin the best chance of survival.
“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,” says Scott.
Joanne was on her own in her hospital bathroom, after waking suddenly with excruciating back pain, when her babies were delivered. Scott had gone home for the evening less than an hour earlier.
“I came in and Joanne was clearly in shock,”
“It’s quite confronting, what a 27-week gestation baby looks like,” says Scott.
Scott says the 13-week journey through the Neonatal Intensive Care Unit was exhausting and 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.
Scott and Joanne’s toddler Archie had his own NICU journey. Scott says 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,”
“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.
Scott and Joanne went on to set up an organisation to help families with babies in the NICU. With the assistance of local businesses, Helping Little Hands deliver food hampers to the parents’ room at King Edward Memorial Hospital every day. Those same local businesses donate their services for special events such as self-care days where parents can treat themselves to a massage by trained therapists.
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.
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,”
“If dad’s not travelling well that’s going to impact the mum and the children,” explains Dr Little.
Therefore, it’s really important that there’s support for mums and dads to get enough sleep, have adequate nutrition, and to be able to engage in pleasurable activities that don’t involve parenting.
If you’ve been feeling down for a period of two-weeks with no pleasurable feelings that’s a clear warning sign that you need some extra support to help you get through this stage in your life.
According to Dr Little, 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.
So, what can you do if you’re experiencing any of these symptoms?
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.
And then the next breath-in will be deeper.
Repeat three times.
Take time throughout your day to stop and do some abdominal breathing – try breakfast, lunch, and dinner. This will remind you what a deep breath feels like. It will also make you stop for a moment and be in the present moment.
“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 into the present moment it gives us a break from some of those more negative thoughts,” says Dr Little.
There are many fabulous resources available to help if you’re finding your days are filled with overwhelm.
Please reach out and ask for help.
Until next time,
I wish you Double Happiness Multiplied.
Abdominal breathing is a really good way to calm yourself down if you find anxiety or worry is taking over.
Bring your mind back into the present moment gives you a break from negative thoughts.
Do your research and demand answers to your questions.
Twin-to-twin transfusion syndrome effects monochorionic pregnancies.
Helping Little Hands
Joanne & Scott Beedie
Never the Same – Families Forever Changes by Twin to Twin Transfusion Syndrome
Dr Gretta Little
Miscarriage, stillbirth, and newborn death support.
TTTS Support Team