“I would do it all again just to have the chance to hold my baby one more time.”

On April 4, 2020 my life changed forever. I went into my 13 week ultrasound only to be told the baby was showing signs of Trisomy 13. I had no idea what this condition was, everything was such a blur, all the sonographer could tell me was it was fatal.

Trisomy 13

I felt like my world had tipped on it’s axis. I was sent to my obstetrician who sent me to Melbourne, nearly 3 hours away, to have a CVS done the next day. I spent that night researching Trisomy 13. The next day before I even had a chance to go into the procedure room, they put me in the room with a genetics counsellor who basically told me my child would have no chance of survival and I may as well terminate now to save him from being a drain on the medical system.

I was crushed. Seeing my baby kicking away while the Dr tried to get the sample for the test was the hardest thing I have ever had to watch ( especially on my own as Covid had started to hit and restrictions were in place). But it made me realize as long as he was willing to fight so was I.

I went to my Obstetrician the following Tue and got the results i had been dreading. The results were positive for Full Trisomy 13. I also found out that my baby was a boy. The obstetrician was adamant it was highly unlikely he would survive to even 18 weeks but if he was going to pass I wanted my baby boy to make that call, not me.

Weekly ultrasounds and the weeks passed and my baby kept fighting. I found out our local hospital wasn’t equipped to deal with a baby with his specific needs and got the necessary referrals to transfer his care to the high risk care unit at the Mercy in Melbourne, who was willing to give my baby the chance he deserved to be born alive. Weekly appointments requiring 7 hour return trips were made to Melbourne for monitoring.

At 28 weeks 4 days we had a fetal cardiogram done , which confirmed the heartbreaking news that he had a major heart condition of Atrioventricular Canal (Endocardial cushion defect). He also had a number of ventricular septal defects further down the septum. It was also confirmed he had Alobar Holoprosencephaly, Microphthalmia and a large proboscis between his eyes with no formed nose.

Then at 34 weeks3 days my membranes ruptured and i went into preterm labor. We were rushed to a local hospital who ambulanced us to the Mercy. They were able to stop my labor by the time we reached the hospital and they were considering sending us home, as I had an obstetrics appointment the next day they opted to keep us there overnight.

The obstetrician came and saw us the next morning confirming my waters had gone and I was at risk of infection. He went and spoke to the other members of our care team and it was decided in the best interests of myself and bub to have a emergency caesarean.

Carter was born at 5:06 pm on Wednesday the 2nd of September 2020. He entered the world crying and boy did he have a set of lungs. No medical interventions could be done but comfort care due to the extent of his facial abnormalities and I was advised no one would do surgery on a Trisomy 13 baby.

My sweet baby boy, who showed me a side of myself I never knew existed, passed away at 7:27 pm, 2 hours and 21 minutes after birth. My beautiful baby boy, who everyone was willing to give up on and pressured me to terminatsaying “no one would judge you for terminating”, proved and surprised everyone who knew our story. He made it into this world fighting and proving the statistics wrong and even though there were endless sleepless nights, thousands of kilometers travelled, so many tears shed and heartache that i wouldn’t wish on my worst enemy, I would do it all again just to have the chance to hold my baby one more time.