My name is Elena Di Fiore and I am mum to our 2.5 year old son Domenic and our identical six month old twin daughters Emilia & Sofia.
In March 2021, I received a single embryo transfer to learn seven weeks later at our dating scan, that we were expecting identical twins.
In late May 2021, my obstetrician advised that whilst we knew I was pregnant, we needed to monitor my pregnancy for Twin to Twin Tranfusion Syndrome:
“Approximately 70% of identical twins share a single placenta, and roughly 10% of these are affected by Twin to Twin Transfusion Syndrome.
The syndrome is caused when blood vessels that connect the two umbilical cords on the surface of the placenta allow blood from one twin to flow into the other. This can lead to a life-threatening imbalance of amniotic fluid pressure around the developing babies.
This condition affects both twins differently. However, the end result can be heart failure for either twin, and due to the interconnected nature of their blood flow, this can cause the other twin to die or suffer brain damage and disability.
Leaving severe Twin to Twin Transfusion Syndrome untreated is dangerous for both babies and can result in the loss of both babies up to 80% of the time.
Mater sees 24 cases of Twin to Twin Transfusion Syndrome a year from families across Australia.” - Mater Foundation, March 2022
From 16 weeks, I would have fortnightly scans locally in Bundaberg, QLD.
On Friday 9 July, we were called into an urgent meeting with my obs who advised that stage 2 TTTS had been picked up on my 16 week scan. As she described, Sofia was a stuck twin with no fluid around her and Emilia had more fluid than she needed, which was causing her heart to work overtime. Overwhelmed with this terrifying diagnosis, we were filled with fear and concern, as to how we would overcome TTS to finally have our baby girls safe in our arms. It was then she referred us to see Professor Sailesh Kumar at Mater Mothers, Maternal Fetal Medicine Unit on July 12 in Brisbane, 300km from home.
We packed our bags and left the next day to drive to Brisbane, our hearts and our minds paralysed with fear. At 16w5d, we met with Professor Kuamr who advised of our grim diagnosis. We had a few options - termination being one - the other was to stay local to the hospital for two scans each week, with the hope I wouldn’t miscarry in the meantime. We hoped to make it to at least 19 weeks, when Professor Kumar would operate in attempt to save our precious daughters:
“Fortunately, there are treatments. The most common treatment is a procedure called “amnioreduction”.
This is an ultrasound guided procedure that has increased the survival rate to 60 per cent of affected babies. Of the survivors, 20 to 25 per cent may have subsequent brain damage and disability.
Mater pioneered a new fetal laser treatment that improves outcomes for affected families— increasing the survival rate to 75% and reducing the risk of developmental
delay or disability to 10%.
Fetal laser surgery involves passing a small camera into the amniotic sac of the recipient twin. A laser fibre is then used to block the connecting vessels on the surface of the placenta and stop the flow of blood from one twin to the other.
This life saving procedure was first performed in Australia in 2002 at Mater Mother’s Hospital.” - Mater Foundation, March 2022
Those three weeks were terrifying. Every day was a wait and see situation, and it was still too early for me to feel the girls moving so I was going out of my mind not knowing how they were growing. My only hope was to make it to the next wellbeing scan.
At 19w1d, Professor Kumar operated on me under twilight sedation. I remember most of the surgery, and watched on the big screen as he entered Emilia’s sac through a port hole created in my tummy. I’ll never forget the feelings that flooded over me when we were told in recovery that the girls hearts were still beating.
I was discharged the next day on light duties so stayed in the apartment we were renting, with my primary focus to rest.
On August 8 2021 at 6pm, my waters broke. Emilia’s sac had ruptured and I was only 20w4d into the pregnancy. The emergency doctor at Mater Mothers Pregnancy Assessment Centre advised that should I go into labour now, the girls would not be viable. We felt like the walls in that emergency room were closing in because we, ourselves were completely helpless as to what was about to unfold. They inserted an obstetric canula into my arm and I was admitted for the foreseeable future.
I can remember waking at 20w5d to discover my waters were still breaking (and they continued to do so for 11.5 weeks). It was immensely challenging, knowing every day was the unknown. My obs canula was removed at 20w6d and we had flown grandparents over to care for our son while I stayed in hospital. Professor and his team cared for me in ways I’ve never experienced. Together with clinical support from midwives and pastoral care, occupational therapists and a social worker, I pushed through each day on bedrest with bathroom privileges. During this time, I experienced two Brisbane covid lockdowns where I wss unable to see my son for a total of 2.5 weeks. Anytime I needed to leave the ward for scans and the two MRI’s I had during the pregnancy, was via wheelchair.
At 32w1d, Emilia & Sofia entered the world via c-section. After four days on CPAP, they were making good progress and after 5.5 weeks in the NCCU, we brought them home to Bundaberg.
It is now our wish to raise funds that will support Professor Kumar and his team with continued research to help future parents who experience this terrible diagnosis.
We know, without Professor’s care, his team that provided clinical support (and the referral from my Obstetrician), our darling daughters would not be here.
We would appreciate your support in making a donation to continue the research and provision of clinical support for parents who find themselves in a situation like ours.
Check out the top three fundraisers!
Keep up your great fundraising and you could see your name in lights at the top of the leaderboard!
Thank you to our Sponsors
David & Elena Di Fiore
Peter & Suellen
Love Suz & Pete ♥️
Michael And Peta
Such an important cause. ♥️MD, PJ, RD & HD
Rudy & Candice Valzan
What an amazing job your doing Elli! This is very close to our hearts & we thank you for the opportunity to give back to help fund research for future families who find themselves in our situation xo
Such a good cause 💕
Ali & Damo
Hoping to contribute to make a change!
Nicholas And Grace Farinola
A beautiful thing that you are doing, to raise awareness about what you faced and the important work being done to save young children's lives. Such a worthy cause.
After going this myself in 2006 and been the first to have surgery under twilight sedation to stop the blood flow and been in many medical case studies and news articles I’m happy to say my twin boys are now 16 and healthy. Proud to be supporting this cause.
Leigh + Kane Devine
A cause very close to our hearts too, well done x
What a captivating story and an amazing cause to support. Thank you for sharing and good luck with your fund-raising efforts.
Louisa Di Fiore And Michael Cooke
John & Tina Di Fiore
I have watched your families journey and struggles and was happy when your little girls joined our wonderful world.
Nicole And Harvey
I'm lucky to be a part of your journey, even in a small way and am grateful for all you've done for me. I really hope you reach your goal.
I hope you reach your total, my friend.
Lové to you and your family.
We are truly lucky to have such amazing medical break throughs happening right here in Australia.