We were very happily pregnant walking into our 12-week scan, we had decided between us to opt-out of any antenatal testing and would just go with the scan, and we were looking forward to seeing our baby. A few minutes later we are looking at our baby on the screen, it’s heart beating away, I felt a relief flood over me. That was until the sonographer appeared to go very quiet, she looked like she kept scanning the same bit over and over again. I looked at Chris, Chris looked at me and gave my hand an extra squeeze. The sonographer then turned to us and said “I’m really sorry but your baby doesn’t have a face.” No face, what was this woman talking about? I started to cry and Chris stepped up to ask all the right questions, frustratingly questions she couldn’t answer. With no doctor available to see us, we were sent away and told to wait for a new appointment at the city hospital.
Four long days later, after lots of googling the big words that were written in our scan report, we were petrified waiting to go into our next scan. Thankfully we had an amazing fetal medicine specialist and a lovely midwife, that delicately told us our baby likely had a chromosome disorder, and it was pointing towards trisomy 13, 18 or 21 (Pataus, Edwards or Down Syndrome) and it may not survive the pregnancy. Our world shattered. We were offered further testing, an amniocentesis or a termination! We declined all of them, personal choice, but to us, it didn’t matter what name they gave the condition it wasn’t going to change anything, we wanted to keep our baby regardless, for however long we were lucky enough to have it.
We made it to the 20-week scan, eight weeks of worrying if our baby was even still alive. I did way too much googling in that time, saw things I wish I never did, but also started to gain knowledge of these conditions. I read other people’s experiences and so many were saying how blessed they felt to be given a baby rocking an extra chromosome, that they were extra special. I wavered between being hopeful one minute and then thinking my baby had already passed the next.
The scan showed our baby was still alive, heart still beating, and growing nicely – the relief! But it had grown enough for them to see just how severe our baby’s condition was. Not only did they think it had a chromosome disorder, and no longer down syndrome, it was looking like the more severe Edwards or Pataus syndrome, it also had Holoprosencephaly, Microcephaly, Cleft lip and a whole list of other facial deformities. In short, our baby’s brain hadn’t formed as it should and was going to look rather different. I remember clear as day, the doctor pulling his chair closer to us, leaning forward onto his knees, and in a very gentle tone telling us the bad news, our baby was “incompatible with life” and was unlikely to make it much further through the pregnancy. Again we were offered further testing and a termination. Shockingly, we also learned that due to the diagnosis we could opt for a termination right up to full term. Once again we refused them all.
Returning home heartbroken, thinking of how many times we were going to have to repeat this bad news and how were we going to tell our children they might not get to meet their new baby brother or sister alive. With both of us being from big families we decided to set up a private Facebook group to tell everyone at the same time (which today has grown to have quite a following; Jovie’s Journey – Our Special Little Girl). We were very clear that we didn’t want people to say sorry, we were still pregnant and we were so very proud to be the parents of such an amazing little human, however long we got to keep our baby for, it was still our baby. Our motto soon became “prepare for the worst but hope for the best and cherish every memory in between”. With that in mind, we decided to find out our baby’s gender and planned a Facebook live gender reveal (covid restrictions!), we were having a girl! Boy or girl, she had already been named Jovie before conception. We tried to be happy even though the reality was always at the back of our minds.
It’s a girl! 
Family photo at gender reveal
Weeks passed, scans came and went, the worry and tears never faded, but our baby girl was still doing it, showing us all her strength. Her Dad and I brought quite a good balance to the situation, he is Mr. Positivity and I am Miss. Worry About Everything. My brain never switched off, I made it my mission to make sure whatever the outcome, it was going to be the best it could be when the time came. We packed our hospital bag very early with the perfect outfit, a special blanket and matching taggy (so she had something to keep and so did we) and memory-making kits. We also had a meeting with the organ donor nurse to learn if our sweet girl could be an organ donor. I rang funeral directors as I wanted to know exactly what would happen to our baby girl if she should pass. We met with the neonatal team to discuss what intervention we wanted should she survive birth. I started expressing my colostrum for her so she could have the best straight away. We made sure everyone that needed to know about Jovie, knew about Jovie! We had it all covered, it was just a waiting game.
Defying all the odds Jovie made it to full term. We opted for an induction so we could keep a little control over the situation, ideally, the doctors wanted her born 9-5 Monday-Friday, so everyone that needed to be there was, she obliged lol! I was determined to have the perfect birth, and that I did (that’s a whole other story – link to birth video here!)
Jovie came out breathing all on her own and the first thing I saw was her most beautiful face!
Jovie is now 7 months old (at time of writing), defying all odds and living her best life. She has every diagnosis the doctor said she would, (apart from a trisomy – she has Chromosome 7 deletion instead), but how that looks in a textbook and how that translates into life are two completely different things. Jovie is certainly compatible with our life and hers, we don’t know how long that life will be but what we do know is all those people we spoke to before in the same boat, they were right, these babies are so very special. With Jovie comes a new appreciation for life and a love like I have never ever felt before, she shows an unbelievable fighting spirit and has already impacted this world in her short life, in a way other people can only dream of doing.
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