From very early on, in fact, the week we conceived Jack, I was unwell, so much that we were all convinced I was further along than I was. Little things were always off with each scan but not a huge concern, a two-vessel cord and then a marginal cord.
I remember Jack’s movements significantly changed at 27 weeks, but the doctors weren’t worried at that stage. When I think back now, I know he was actually telling me he wasn’t okay.
At my 28 week growth scan, things got a bit scary. It started off that I just had polyhydramnios, and the blood flow pressure in my umbilical cord was high. Again not a big worry, but I started to have weekly scans and regular monitoring in the maternity ward at my local hospital.
Then at 30 weeks, I had yet another scan, only this time the sonographer noticed the blood flow in Jack's brain went to the left lobe when it normally stays in the middle (mca).
I’ll mention that they had never seen this in utero at my local hospital, so they were now worried. This day was a blur, so much to take in, and it escalated quickly.
I was steroid dosed and sent to the Royal Women’s for further scanning. At this scan, they found that Jack had an arterial vascular malformation in the left lobe of his brain. A very scary day, but we had one positive, the sonography accidentally revealed Jack's gender. Although we wanted to wait till his birth to find out his gender, it shed some light on an awful day.
It was decided then that I would birth at the Royal Women’s and was put under the foetal medicine unit. After an MRI, echos and many scans, things looked okay and likely that Jack would be born at the Royal Women’s as a precaution and go home after a few days and look at brain surgery later in life to manage the malformation.
I’m not sure if it was the stress of all this, but from 30 weeks, my pre-eclampsia was setting in. I spent almost every day in my local hospital having monitoring, bloods and trialling different medications, and weekly appointments at the Royal Women’s.
I spent a few nights in my local hospital to get my blood pressure under control but then was admitted to the Royal Women’s, hopeful only for a few nights while they got my blood pressure under control. Unfortunately, my water broke two days into my stay, so it was decided I had to stay until he was born.
At 36 weeks on the dot my pre eclampsia finally got to the point that he must be born, and I had an emergency caesarean at 9.01pm on Sunday 13th June. Jack came out screaming and alert. We had a cuddle before he was taken to NICU for observation, and I was taken to CCU for magnesium infusion and monitoring as I was very unwell by this stage, met calls all night with extremely high blood pressure.
I remained in the CCU for a few days while they managed my pre eclampsia.
I’d been allowed to go see him briefly once when he was just over 24 hours old.
But the next morning, when Jack was only 36 hours old, my nurse was asked by the NICU team to bring me so see him. This is where things just got so much worse.
Pushed into the NICU I could see doctors surrounding Jack and a bottle of blood cultures on the bench, so at first I thought he must have an infection of some sort. I was then informed that they discovered that Jack was born with a lot more congenital issues and that he needed to be transferred to the Royal Children’s for emergency surgery via PIPER.
I was in absolute shock, I still feel like it was an actual nightmare, I had no words, I had left my body, people were talking and I couldn’t even hear it. I then had to call my husband, who had returned to his accommodation for a rest, to tell him that our little baby boy was unwell. One of the hardest phone calls of my life.
Because I was in the CCU and still very unwell with pre eclampsia I wasn’t able to go with Jack, I’m thankful though that David was able to go in PIPER with Jack and then be at the Royal Children’s while he had surgery.
Jack came out of his surgery well and had become a resident of the NICU at the Royal Children’s. After two days I was finally allowed on day leave to see him as I was still unwell with the pre eclampsia.
What I think was one of the hardest things was this was during peak of the 2021 Melbourne Covid lockdowns and David and I couldn’t even be in the NICU with Jack at the same time at this stage. It was so lonely.
I was then told that Jack was born with multiple birth defects affecting his heart, spine, bowel and kidney, and the arterial-venous malformation in his brain.
Each day the doctors would come and tell us more things they had found wrong with Jack. I felt so much resentment for everyone and everything, so much anger. Why has this happened? What did I do wrong? I dreaded seeing any doctor because it was never good news. It was a mess. I was still overcoming pre eclampsia and still an inpatient of the Royals Women’s amongst this all too.
But every day I would be given day leave, I’d get in a taxi and be with Jack for the couple of hours permitted while I was recovering.
At around 5 days old Jack started to go into moderate heart failure, we were told he had a small hole in his heart just a few days before he was born, and it would likely close on its own. As it turned out he had three holes in his heart, two in particular are very large and certainly wont close on their own. Therefore at two weeks old Jack had open heart surgery to repair one hole and to give him a pulmonary artery band to control his heart failure until it was safe enough for him to have his full heart repair later.
Jack was a longer termer at the butterfly ward, he spent twelve weeks there. The beautiful nurses became Jacks family while he was there as no one, but David and I could visit.
We lived in Melbourne for almost four months through all this, during lockdown with a 1 year old. So lucky to have support from family and friends, especially my mum who lived with us for 6 months during all this.
After 12 weeks we finally were transferred to our local hospital to link into our local services.
We finally brought Jack home and he met his big sister Hannah but unfortunately, after two days Jack was back in hospital for another week after catching a virus.
Since then Jack has had a few more hospital admissions, including one for brain surgery which went exceptionally well thanks to his amazing team of the royal childrens and royal Melbourne hospitals.
Jack has at least four more surgeries in the next 12 months, including another open heart surgery.
One of the biggest things I learnt from meeting so many complex babies on the butterfly ward is that we are lucky. We were able to bring our baby home. With everything Jack has, it can be fixed or managed.
Jack is so strong and catching up on so many milestones. He truly a testament to himself. He still has a long journey ahead, but gosh he’s incredible".
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