Nina, 29 Weeks

Miracle mum Sarah shares Nina's story:

Our fierce little Nina was born weighing 645 grams, 29 weeks before her due date. We found out something wasn't right at my 20-week scan. It was flagged during that scan that she was weighing 3 weeks behind and the doctors became concerned very quickly. By the following day I was meeting with the perinatal team, and I was being booked in for an amniocentesis. After numerous investigative tests, we were advised that the likely scenario was that my placenta hadn't formed properly at the beginning of the pregnancy and therefore Nina wasn't receiving enough oxygen or nutrients in the womb and was therefore born severely growth restricted. The pregnancy was extremely stressful as I had bleeds and there were times when they detected Nina was in distress and explained that there could be a possibility she would pass away while in utero. At 25 weeks the doctors asked us to make a decision on whether to take Nina out then or let her stay in and hope for the best. We chose the later, as scary as it was, but we made the right decision as she was then able to make it through to 29 weeks before she was born via emergency c-section. We thought that seeing as she made it to 29 weeks our challenges and stress would be over, and the scary days were behind us. Little did we know that was only the beginning of a 7-month journey of Nina being in hospital until she'd be discharged and get to come home. The first 48 hours from Nina's birth she remained stable and was breathing on her own. After what the doctors termed was the "honeymoon" period in which the babies didn't really know they were no longer in the womb she was fine but then went downhill very fast after 2 days and she was then intubated, and we were told her lungs were struggling to cope. Luckily, I got to hold Nina the day after she was born but after she was intubated the first time it would be another 21 days before we'd get the opportunity to hold her again.
Ninas main issue was she was so severely growth restricted her lungs hadn't had the chance to properly form yet. This meant she was intubated on and off for more times than I could remember, each time she was reintubated the doctors spoke of their concern that she may not pull through, especially if she couldn't breathe on her own, she couldn't be hooked up to the machines forever. She did make it out of the Intensive Care Unit, I remember this because it happened during the footy grand final long weekend and our team the Cats won the flag. We thought it was a promising omen! She was now in the nursery and on CPAP. But a mere 2 and a half days of being in the high dependency nursery, I walked in one day to find 5 or so doctors and nurses gathered around her, and my heart sank. I knew it only meant one thing. There was something wrong. Nina's stats weren't looking good, and they didn't know why. She was moved back to the ICU that day and it was reintubated not long after. 5 or so days later she was diagnosed with CMV. Nina was in the fight for her life, and we were told she would need an aggressive treatment of medication they'd use to treat cancer. The medicine was so cytotoxic that anyone she had tape around her cot and anyone who came close to her had to be dressed in head to toe with protective clothing including protective glasses. Her bed sheets and clothing needed to be washed separately. We didn't know if she would pull through and we lived in fear every day that it would be the day we would lose her. I'd never wish this kind of fear on anyone, but this is the reality for some parents with prem babies. The doctors that were treating Nina needed were having weekly meetings with the Infectious Disease doctors at RCH. Then the time came nearly 4 long weeks after she started the treatment that her CMV count was low enough for the treatment to stop! We were overjoyed! But the battle wasn't over. On the day of her big brother’s 5th birthday, my husband woke me up that morning to tell me that he received a phone call saying that they had to call a code blue because Nina was having a routine heel prick and was so upset she held her breath, but her lungs froze and she wasn't able to breathe. It was just by the chance that there were only 2 doctors who could intubate in an emergency, and she happened to be in the same room at the same time. What were the chances? We knew it was very bad news, but we so badly needed to spend quality time with our son too. Nina's big brother, Sonny. It was 4 and a half months since his little sister was born and he hadn't even had the opportunity to meet her yet due to strict COVID restrictions. We went in to see Nina and were taken to a small room away from the nursery, I'd been taken to enough private small rooms to know it usually wasn't ever going to be good news. Nina had pulmonary hypertension, high blood pressure in her lungs. This meant that every time she became distressed, the veins in her lungs would constrict and much needed oxygen wouldn't be able to travel to her heart and through her lungs and her blood pressure would drop to dangerously low levels. The doctors advised that they couldn't keep reintubating Nina and that there was only 1 option left and we needed to decide if we were going to keep going around in circles, try an aggressive form of steroid treatment, or let her go. A choice no parent should ever be asked. I cried so much that I my head was pounding. My husband was also inconsolable. It was our worst nightmare. Nina had been in hospital for 5 months at this stage. After being given the night to think about it, my husband and I knew we were not ready to give up. We'd come this far, and we truly felt in our hearts that Nina was fighting to stay with us. So, we told the doctors our decision. They advised us that because she had been on a breathing tube for so long, once they took it out, she may simply not breath and they asked us to say our goodbyes in case this happened. There was only one thing on my mind at this stage, Nina needed to meet her big brother. The doctors had to obtain special permission, and this was granted. The lovely Alyce from Miracle Babies had been an incredible support to me, and she offered to organise a professional photographer to come and capture the moment Nina and Sonny would see each other for the first time and, maybe the one and only time. It was the best and the worst day of my life. Thinking about the fact that my 2 babies may be meeting each other for the first and only time. I was so grateful the doctors let it happen and I was so grateful that Miracle Babies was also there, supporting us through the most traumatic time in our life as a family. It was the first time since Nina had been born that we were all together as a family in one room in one space, together. Our family of 4. 10 minutes was all we had and then it was over, and we needed to get ready for the next 48 hours which the doctors advised would be the most crucial. She needed to show signs that she could manage off the breathing tube before they started the steroid treatment. I don't even remember how we got through that time. I think a part of me wants to forget it ever happened but at the same time, I know the fear of losing a child would stay with me forever. There are moments where I still think about that time and cry. But the positive news was that Nina pulled through, at 52 weeks she was transferred to the Royal Children's and stayed there for 3 months and on the 7th of March last year, we left the hospital but instead, we had Nina with us. We've still faced many hurdles since she was discharged. but so far so good. She's still requiring oxygen at this stage, and she is being fed through a nasal gastric tube. But she is crawling, standing, saying Mama and Dada, starting solids, working with a physiotherapist, a speech pathologist, a dietician, an OT and is still being looked after by an amazing multidisciplinary team at the Children's. We are deeply and forever grateful for the nurses and doctors, the world class health care we have in this amazing country we live in, are forever in debt for all the people who supported us, family and friends but most of all, I am grateful for Nina and her fighting spirit.

Want to share your story too? We welcome every Miracle family story, no matter what stage of the journey you're at.
We encourage those wishing to share their story to submit it below:

Share your family story