Sophie

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Miracle Mum, Sheena went from a healthy, normal pregnancy to a sudden diagnosis of preeclampsia after a lucky self administered blood pressure test at her local chemist. She shares the story of how they battled through multiple health complications with Sophie, and discovered just how strong they really are.

"I had a pretty average pregnancy apart from some nasty sciatica, heartburn and gestational diabetes. I visited my obstetrician a week before Sophie was born and my blood pressure was perfect and everything seemed fine except for some swelling in my legs.  

A few days later while waiting at a chemist during my lunch break, I decided to test my blood pressure using their machine and was shocked to see it was very high.  I called my obstetrician who advised me to go straight from work to the hospital. After running some tests they confirmed I had preeclampsia. I was thinking I’d go home that night or the next day but when my obstetrician arrived, he told my husband and I that I wouldn’t leave until I had the baby.  We were so shocked as we were just on 30 weeks and hadn’t even attended parenting classes, had a baby shower, bought clothes/nappies or picked a name. 

We had plenty of visits to the birthing suite over the next couple of nights as my blood pressure just wouldn’t come down and kept rising.  The day before Sophie was born, I had an ultrasound which showed a mass on bubs bowel. They were concerned but reassured me that it was a positive they identified it early and could check on the issue once she was born. On the night of the 18th of July, my blood pressure was 190/110 and I knew she would have to be born that night before anyone could say anything. Our beautiful little girl come out screaming, weighing 1496 grams, 37cms. 

Unfortunately I didn’t get a chance to see my baby girl as she had to be taken to the NICU for monitoring and I was recovering from the cesarean. The following day we were advised that the mass appeared to be a bowel blockage (called Meconium Ilius) so she was taken to the Children’s Hospital next door to be monitored and given nutrients instead of breast milk. Scans also showed that she had cysts on her kidneys and liver but that was something that they could look into it a later stage. 

By day 8 Sophie still hadn’t opened her bowels so we got the scariest news of our lives, they were going to have to operate on our teeny tiny baby who had now dropped to 1.3 kg. The bowel resection went well and we were told they had to remove 12 cm of her bowel but it shouldn’t cause her any long-term issues. We were also told that the block she was born with was almost always connected to a genetic disease called Cystic Fibrosis. Our hearts sank for what felt like the millionth time less than two weeks. We had to wait weeks for the newborn screening test to be re-done and for the results to come back which we were told we are clear thankfully. They did find that she was a carrier of a different disease but were told that she should be fine.

Over the coming weeks after her bowels had finally opened, Sophie’s poo was almost a white/grey colour which gave us yet another cause for concern. The doctors sat us down and said that she had a something called neonatal cholestasis which was an issue with the liver/bile duct secretion issues.  We were also told that this could be caused by something called Biliary Atresia (rare, scary disease that would mean she would have needed another major surgery and a liver transplant down the line). It would take a further few weeks of specialised scans to rule this out. 

In the meantime, we were spending all day and night at the hospital doing kangaroo care and I spent every other minute expressing milk. It was by far the toughest time of our lives but for those few short hours each day when I got to hold my baby girl close to my heart, everything was perfect.

A few weeks later we noticed a bulge in her groin so Sophie had her 2nd surgery to repair a hernia. Her Fallopian tube and ovary on one duct was damaged but she came out of surgery and recovered very well. 

During our time in hospital, we realised how, unfortunately, our situation was all too common and how helpless you feel. You also begin to realise how truly strong you can be, to give everything you’ve got to your precious new baby. I scanned the hospital walls every time I went home for other families stories to give me strength and hoped that one day I would get to look at my very own healthy toddler/child/teen. 

Sophie spent a total of 62 days in NICU and when she came home, the fun really started! She wouldn’t sleep (a maximum of 2 hours in a 24 hour period) no matter what we tried, even multiple hospital/doctor visits and a weeks stay at Karitane.  

Eight months later Sophie had a sweat test to test for cystic fibrosis and fortunately that came back negative. It was around this time that she finally started to sleep. It may take a while, but it does get better. 

Today, Sophie is a happy, healthy, strong willed little 2 year old that is completely obsessed with the Wiggles and loves to dance and climb on everything and anything. 

It’s hard to see the light at the end of the tunnel when you’re going through such a heart wrenching time, but know you’re not alone and there will come a time when you’re ready to share your story with others to let them know that it will all be ok."

Thank you Sheena for sharing your amazing story.

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