Benji, 29 weeks

Miracle mum Shari shares Benji's story:

After more than 12 months of trying for a baby we decided to reach out for help. We had our first IVF consultation and began all the testing in December 2023. By February 2024 we had been advised that Mike’s sperm had low mobility and motility and that I had to lose at least 15 kilos in order to get my BMI down to a number they were comfortable with.

By May 2024 I had reached my goal weight and we were ready to start. We were advised ICSI would give us the best odds of success. We got all our scripts (there was so many) and by June I started the numerous injections, Mike had to help with them as it was mentally and emotionally hard on me and my body. On the 24th June 2024 I went in for my egg retrieval. We retrieved 12 viable eggs which was exciting and we were trying our best to keep positive. Over the next few days we would get daily updates on the quality and viability of the fertilisation. We ended up only having 2 embryos which worked and could be implanted. On 29th June we had one embryo implanted, and we tested the old wives tale and got the Maccas chips straight after.

Then the waiting began- this was the hardest part as I am so impatient. I did buy multiple pregnancy tests as I couldn’t wait the 10 days for a blood test to find out…..and they were POSITIVE! We were so excited and we got the official confirmation n 8th July. Getting bloods every 2-3 days to ensure my HCG levels were rising. It was so hard to keep it to ourselves for the 12 weeks as this little bub was waited for and already loved by so many people. On 2nd August 2024 we had our first ultrasound at 7 weeks and it was emotional seeing bub on the screen and knowing it was all real.

The next 10 weeks were amazing as we shared our news and starting setting up the room. At work on a Friday at 17 weeks along I felt a gush of water and thought I had wet myself and maybe Bub was sitting on my bladder. As it wasn’t too much I just let it go. By the Sunday we were more concerned as it was now a constant leak. I went into King Edward as that is who was looking after my pregnancy and birth. They checked me in emergency and ran some tests, they advised it is likely just leaking from my bladder and it was not amniotic fluid. We had also found out we were expecting a little boy at this point.

3 weeks later we went in for my anatomy scan. We knew something was wrong straight away when the Drs wanted to see us straight away. We were advised that bub was sitting in only about 2cm of amniotic fluid and that it was likely he may not survive and may have a lot of health issues if he does survive. At this point we were in shock but I knew in my heart we had to fight for our baby. We were being pushed to end our pregnancy and having multiple meetings advising us of all the problems that were going to occur. I was admitted to King Edward that night as my blood pressure was high and they wanted to monitor me.

Mike and I decided that as long as there was a heartbeat we were going to continue with the pregnancy. The Drs agreed but I was on close monitoring at MAFAU as I am a diabetic and had high blood pressure. During all my monitoring and blood tests they also found my kidneys were deteriorating quickly and my Urea and Creatine levels were through the roof. By this stage I had been assigned to the Gold Team under Dr Shen and I was having ultrasounds every Monday and Thursday as well as bloods every second day as if my kidney levels reached a certain point we would have to deliver. At 24 weeks I spent a few nights in hospital after having steroid injections to strengthen bub’s lungs.

It was touch and go so many times, but on 31st December 2024 I was admitted to hospital again with high blood pressure. On 2nd January 2026 my blood pressure had dropped again and I was expecting to go home. But the drs had decided it was time, after a frantic call to Mike to get him by my side I was prepped for a C-Section. Being emotional and anxious I had a panic attack before they took me into theatre but the team were amazing at tyring to keep me calm.

At 2.55pm on 2nd January 2025 our little 29+3 weeker made his appearance weighing just 950grams and 32cm long. Benji Michael was shown to Mike and I before he was whisked away to the NICU. I don’t remember much after that as my blood pressure plummeted and I was taken into the ICU for the night. I woke up the next day just wanting to see Benji.

Eventually I got the all clear to leave the ICU and we could meet Benji. Seeing him in the Humidicrib with e CPAP machine on was heartbreaking. We got to have our first cuddles and skin to skin and it felt unbelievable that he was here and had made it, now we just had to wait to see what (if any) issues he might have. We went through the first few weeks in NICU uneventfully, Benji went from CPAP to Hiflow, passed his eye tests and seemed to be doing well. In the meantime I was not getting much Beast milk so we were able to use what I was getting and using donated breast milk as well as supplementing it with formula. Benji didn’t seem to be able to keep down the milk so the Drs thought he may have a lactose allergy from the formula. When he got worse they told us they needed to send him to PCH for testing for NEC (Necrotizing Enterocolitis). He went through numerous scans and tests to thankfully clear him of NEC and it was decided it may be Colic and he was sent back to King Edward.

We were moved up to the Ward which was the final place before he got to come home, whilst up on the ward Benji caught Influenza and Rhinovirus. Back onto the breathing support he went and we were sent into Isolation back downstairs. This was the hardest part as we were on our own with a dedicated nurse just for Benji. We were stuck here for 2 weeks. Whilst there I was admitted to Midland Hospital with my kidney failure so I was unable to visit Benji. After 3 nights away from Benji, he got the all clear to be transferred to Midland NICU so I could be with him. We started in isolation in Midland but then got to go the general NICU.

On the 29th March 2025, after 73 nights at King Edward, 3 nights at PCH, 9 nights at Midland countless feeding tubes, 2 blood transfusions, CPAP, HiFlow and HHF and 2 viruses at once, we got to take our little miracle home! The first place we went was to my Grandparents to introduce him to them, as no one could come and visit in the NICU (apart from 4 nominated people). Our family and friends were so excited to finally meet Benji.

In April 2025 Benji went in for surgery on the double hernia above his groin. Walking him into theatre and placing him on the table before walking out was so hard to do, but knowing it was only a quick, simple surgery and we would be going back home the next day kept us going. Finally we were done with hospitals for a while and we could enjoy life as a family of 3 and get settled into a routine.

We did have Physio and Paediatric follow ups at both King Edward and Midland Hospitals and Benji was doing so well. He was on a special formula which was Lactose free and medication for the Colic, as well as Iron for his low levels. We got to spend our first Easter, Mothers Day and Fathers Day and Christmas with our little man. He got signed off from Physio group in March 2026 and had our follow up with Neonatal Follow Up Program at 1 year corrected which he passed with flying colours.

Benji started walking with assistance in April 2026 just in time for Mike and I to get married. He is now running everywhere, climbing up and down stairs and is a happy, sociable little boy. He is the centre of attention wherever we go, especially to my dialysis appointments- he is a good distraction for the nurses and patients.

We met Megan from Miracle Babies whilst in King Edward. She would come around every Monday and Wednesday and check in with us, would stop for a chat and see if there was anything we needed. We were so grateful to have the support of Megan whilst we were exploring new circumstances. We were told about the new Miracle Babies playgroup which had started in Morley and decided once we were home we would give it a go. In August 2025 Benji and I attended our first playgroup session, we were made to feel so comfortable and welcomed into a group of Mums, Dads and Bubs who had some of the same experiences as us in the NICU. Run by Rachael, we have made some amazing friends and bonds and have not missed a session since we started. I find it is good for my mental health as we are asked how we are feeling and invited to share our wins or worries for the week. We have taken part in the Miracle Moon Walk in 2025 and the High Tea in 2026 and love hearing everyone stories and seeing how amazing all of our miracle babies are doing.