Dani and I connected via a Facebook group for mums of multiple births, I’ve met a lot of my twin mum friends through this page!
Twin to Twin Transfer syndrome was the first thing mentioned to me after the words ‘I’ve just found a second heartbeat my so any parent of identical twins may know all about it but if you’re not a parent of identicals you may be wondering what it is and what the big deal is!
Thanks so much Dani for sharing with us how you went from hearing about TTTS at your first to knowing first hand the impacts that can occur.
So Dani, when did you find out you were pregnant with multiples? Did you have any idea before your scan?
I went for my dating scan at 6 weeks. The sonographer showed us everything for our baby. She then moved the probe slightly and said ‘Oh hang on a second. There’s two’. Funnily enough the day before I was at my hairdresser (who has little psychic moments) and without any prompting, she said there was babies on the way and asked if there was twins in the family. I laughed it off but it turned out that she was right!
How old are your children now?
They are 21 weeks old but 9 weeks corrected
Do multiples run in your family?
No
What is the best thing about having more than 1 baby at a time?
It’s really lovely that visitors and family don’t have to take turns holding the babies. They can just have one each!
I love that they have a little friend and they are never alone.
What sort of pram do you have? Why did you choose the one you have?
I bought the Valco Baby Snap Ultra duo. I liked that it can lay completely flat so it is good for newborns. I wanted a side by side pram so that the babies could see around them. I also liked that they can face towards the driver or outwards. The cost was also a factor for me, it wasn’t as expensive as some other options.
How do you manage with more than one baby?
With a lot of help. Take people up on their offers to cook, or shop or look after them while you shower!
I have a cot in my lounge room so when I feed during the day the other baby can be safe in the cot. This was especially helpful in the early days. I also had a mat and nappies in the lounge so I wasn’t carting them back and forth around the house.
Talk to other mums- especially twin mums! They are full of wisdom.
Are your babies identical or fraternal?
Identical
Were your babies naturally conceived?
Yes
What are some of your top purchases for multiples?
Decent car seats- you can’t go without these.
My ergo sleep pouches are super handy- they kick off any blankets so I know they’re warm with the sleep sacks
Dummies- to help soothe when you are busy with the other baby.
Double Zipper onesies- you don’t have time to mess around with difficult clothing when there’s two to change!
White noise machine- my girls love music!
How do you decide which baby to settle/feed/change if you’re alone?
The loudest one! I see if they can settle with a dummy and if that fails then whoever is still the most upset is the first baby!
I keep track of who has had a decent feed at the last feed and who might be the hungriest.
Sometimes I have to hold them both and rock in the rocking chair!
How do you tell your babies apart?
One of my girls is about 500g heavier and has dimples.
Have you labeled your babies in any way to make sure you don’t get them mixed up?
I stressed about doing this and we talked about using nail polish on a toe or bracelets but we haven’t needed to yet.
Do you have a set routine and if so are the babies all on the same routine?
Not a strict routine as yet. I’m off work this year so I just follow their lead at the moment.
We are basically sleep, play, change bums, feed, cuddle and try to put down for a nap. We do have a night time routine that involves bath, dinner and reading a book/ listening to music.
What is TTTS?
Twin to twin transfusion syndrome (TTTS) is a condition that affects 10-15 % of identical twins when they share a single placenta.
Blood vessels that connect the two umbilical cords allow blood from one twin (the donor) to flow into the other twin (the recipient). This basically means that one baby is getting too much blood and the other is not getting enough (causing problems for both babies). If left untreated there is around a 10% chance of survival for the twins.
When did you first find out your babies were at risk for Twin to twin transfer syndrome?
At my first obstetrician visit the Dr outlined the risks of my type of pregnancy. I did a lot of research and reading up on what could occur so TTTS was something I had read about.
How did having TTTS impact your pregnancy and being a new mum?
When I was 16 weeks pregnant I was referred to a tertiary hospital 3.5 hours away that had a Maternal Fetal Medicine clinic. At my first appointment they noticed the babies were in the first stage of TTTS. We had weekly monitoring in Brisbane. By 18 weeks we were stage two. By 20 weeks it had progressed to stage 3. This meant we would definitely need to have laser surgery to cut the vessels between the two twins. The statistics they gave us were pretty scary, but this was the only option to try to keep both babies alive. I had surgery later that night. They were successful in cutting the vessels. I continued being monitored weekly.
This affected my pregnancy greatly. I was constantly travelling to attend medical appointments whilst juggling being a primary school teacher. I was too anxious to buy anything for the babies because I didn’t want to have a room full of things and no baby/ babies to bring home.
I didn’t get to enjoy my pregnancy because I was too worried about the outcomes of TTTS
Did you spend any time in the NICU or SCN?
Yes. My babies were born at 27+6 after PPROM. (Preterm Premature Rupture of Membranes)
They spent 8 weeks in NICU and about 4 weeks in SCN. We got back transferred to our local hospital 10 days before they came home. They came home 2 days before their due date at 83 days old.
Does TTTS have any lasting impacts on your family?
It took me a few weeks when we were home to actually settle in with the girls. I was constantly on edge and thought something bad was going to happen (because that had been the reality of the last few months).
The future is scary as we don’t know what the TTTS and being 12 weeks early will mean for our babies. There’s a big chance of disabilities or medical issues. But we are so lucky to have them with us that we will deal with whatever comes our way.
Is there anything else you would like to share?
I found it helpful to be informed about the girls condition and what would be ahead. I wanted to know what could happen. I joined Facebook groups and read what some would call ‘horror stories’ but those stories taught me about actually what happened to us.
Don’t be afraid to ask questions and advocate for your babies.
I was so scared to have two babies to look after when I didn’t even know how to look after one. It’s a really tough gig! But i wouldn’t have it any other way. I’m forever grateful for my little fighters!
Twinning with Tegan 