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I was so scared to lose her and it took me awhile before I could call her by her name

When early scans revealed Baby Olivia was severely growth restricted, mum Leigh knew she would have an uphill battle.

This is Leigh’s story:

My husband and I were absolutely ecstatic when we found out we were expecting our first child. Due to some previous health events, I knew my pregnancy wouldn’t be without some challenges, but I did not expect this. 

All seemed fine at our early scans but at our 20 week scan I was told bub was measuring well below the expected size for her gestation. We were then referred immediately to our local hospital’s maternal fetal medicine team. At our first appointment we were told the likelihood of bub’s survival wasn’t high at this point due to her extremely small size and gestation.  Also, if we got further down the road and she did survive, the chances of bub having medical and developmental difficulties was also very possible. 

Holding out hope

Every fortnight, week, then towards the end, multiple scans per week, I’d hope that my baby was continuing to grow and the blood flow to bub wasn’t at the point where I’d have to deliver. I remember telling bub if she was meant for this life that she needed to make it to around 500g so they could fit the breathing tube into her to have any chance of survival. That’s what we were told and all we could do was hang tight and hope. 

We made it to 28 weeks + 2 days and she was born severely growth restricted at 544g, via emergency c-section due to reverse blood flow (placental insufficiency). I remember seeing her tiny legs and feet and hearing her briefly cry. I heard the team and my husband take my daughter away to NICU while the other team were finishing my surgery and it then hit me like a freight train of what now may lay ahead. I just prayed she’d make it through the next 24 hours and took it a day at a time from there. I can honestly say that Olivia is alive today because of the amazing and caring maternal fetal medicine team and the NICU team. I will be forever grateful to them. 

Facing the challenges ahead

The next 102 days of visiting Olivia, while trying to recover from the c-section, was an emotional rollercoaster. I clearly remember a nurse saying to me on one of the first few days, “It’s ok Leigh. You can love her.” That still makes me cry to this day. I was so scared to lose her, and it took me awhile before I could call her by her name. She was ventilated for just over 24 hours and then had CPAP for a long time. Watching her learning how to breathe on her own during multiple trials off CPAP and her constant difficulties with tolerating feeds was hard, but thankfully she was slowly growing and she didn’t have too many other difficulties during her stay. My main support, other than my wonderful husband and family at this time, was the mums I saw every day in the expressing room. We’d share the good and hard times together and that has built friendships that I’m sure will last a lifetime. 

The day we took her home we were overjoyed! Little did I realise this was just the start of another journey that has had its own challenges but so, so many moments of just immense joy. We’ve spent a fair bit of the past 3 years going to medical and allied health therapy appointments (including some short hospital stays) so we can support her to be the most amazing Olivia she can be. We have a wonderful team of health professionals supporting us every step of the way. Our families and friends have played a huge role in keeping our little family unit functioning. 

Three years on

At three years of age, she’s the brightest and most energetic spark, that loves to talk, sing and play. She’s recently started family daycare and she’s just loving playing with the other kids. She continues to have gross motor delays and difficulties with gaining weight but what she doesn’t have in size (8.7kg) she makes up in personality. She is so loved and we’re immensely proud of how far our tiny girl has come! My heart is full and as the intensity of these past few years starts to settle, I know with our village, we can get through anything thrown our way. 


Share your story

Have you found comfort in reading other parents’ stories? We get lots of grateful feedback on how reading these personal stories help new parents to cope with their own experience. Every family has a unique and important story to share. Share your journey and celebrate your story below.


Karen Peters

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