Ashleigh and her husband Joshua were excited to discover they were pregnant again, seven months after welcoming their first child Estella into the world.
But at their 20 week ultrasound appointment, doctors gave them the devastating news that their baby was critically ill with pleural effusion – where fluid builds up in the space around the lungs of a developing fetus. They were warned to prepare for the worst.
A member of the Mum’s Grapevine Summer 2022/23 Due Date Group, Ashleigh shares her daughter Penelope’s inspiring story of overcoming the odds.
“We spent 3 years trying to fall pregnant with our Winter 2021 baby, so when we finally did it was a blessing. My mum was terminal at the time and passed away when she was six weeks old so it was amazing to have a perfect little baby to share with her before she passed. But it meant we missed a lot of the quiet moments most get, being able to stay at home with their newborns and just soak in the love. We decided life was too short and we wanted to travel and see the country, so moved into a caravan and started exploring by the time Estella was six months old. We didn’t expect to fall pregnant again quite so soon but we found out we were pregnant again when Estella was seven months. We did a bit of travel through the first and some of the second trimester but made it back to Brisbane for our 20 week scan as I wanted to birth in the same hospital as we did for my first (Royal Brisbane and Women’s Hospital).
“I was sick all the time, not throwing up but constantly nauseous and I became almost allergy level intolerant to dairy too. Pregnant without being able to have chocolate? Not easy. Our 12 week scan went perfectly. She was as perfect as we could hope for. But at our 20 week scan, the sonographer found fluid on Penny’s right lung – called a plural effusion. It was a relatively small amount but they referred us to the Maternal Fetal Medicine unit and we were warned how serious it could be. We were likely to lose her but they would monitor her and see how she went before we had to discuss our ‘options’. At 23 weeks the fluid had gotten worse and was now on the left side too, so they booked us in to have a pleurocentesis (to drain the fluid from baby’s lung). This happens while awake with minimal numbing and you have to be completely still. In the four days between the scan and the drain, the fluid on the left lung had increased to such a large amount that it was actually pushing her heart over to the right side of her chest.
“We weren’t given a lot of hope that she’d make it, but after draining 23mls of fluid off her left lung, the fluid in both sides actually disappeared and didn’t seem to have returned. We were closely monitored for the rest of the pregnancy though just to be sure.”
‘We had a really tough choice to make’
At 24 weeks along, Ashleigh started getting strong Braxton Hicks contractions, most likely brought on by the procedure.
“Around 34 weeks, my belly was getting bigger and bigger and was sore to touch most of the time. My Braxton Hicks would get so bad I struggled to breathe through them, but we just kept plodding along. Up until now there was no longer any sign of fluid on her lungs so we’d stretched out the most recent scan to three weeks, our last being at 33 weeks. Things just kept increasing as time went by and I kept joking that this baby was in a rush to be born and she was coming sooner rather than later and definitely wasn’t making it to 40 weeks.
“I went to my 36 week check up with my midwife at 11am on the 10/11/22. It was the first day I went to my appointment without Josh as everything was fine and we thought it would be a quick in and out. Bub’s heart rate seemed ok and I was measuring 41 weeks rather than 36 weeks, but still not much to write home about. I waved to my amazing midwife and said I’d see her in a few days coz this baby wasn’t waiting and she completely agreed with me. I had lunch and I then toddled my way up to have a scan at one o’clock. That’s when things went downhill.
“As soon as the sonographer started I knew that something was wrong. I could see the fluid had reaccumulated but she didn’t want to say much without my doctor’s input. Even my doctor was confident that things had improved and she was planning on telling me I’d be induced, regardless of my not wanting to after my first. So she wasn’t expecting to have to tell me we needed to call Josh to get to the hospital as soon as possible. My midwife, Bianca, came up to hold my hand while Renuka, my Maternal Fetal Medicine specialist explained to me with Josh on the phone that we had a really tough choice to make.
“Penny had reaccumulated so much fluid, her chest was full and it had progressed from a pleural effusion to full blown Hydrops – a severe, life-threatening condition in which large amounts of fluid build up in the developing fetus. It was in her chest but also now her abdomen and her skin too. Our options were to wait – she would have died and I would have been at risk of mirroring her symptoms, putting me in danger too. We could be induced when Josh got there – this would have been the least risky option to myself, but Penny wouldn’t have survived. Or I could have an emergency c-section, which would put me at risk but increase Penny’s chance of possibly surviving.”
An emergency c-section is called
With her maternal instinct kicking in, Ashleigh says the decision to go for an emergency c-section was a “no-brainer”.
“I was getting dressed into a gown by the time Josh made it to the hospital. I was so nervous and I don’t think I have ever been so terrified. But at the same time, it was like a numbness overcame me and the only goal was to give our little girl every chance possible. I remember being taken into the surgery room and being so overwhelmed by the amount of people there…we counted later with our specialist and realised there was about 18 people in the room with everyone needed.
“The surgery went well and Penny was intubated within three minutes. I never got to hear her cry and through the crowd of doctors all I could see of her was a tiny little leg that wasn’t moving. But a nurse took my phone so that I would at least have a photo of her. Josh followed her to the NICU and stayed with her until we knew she was stable. She was born just after 3pm and it wasn’t until 8pm that I was allowed to see her for five mins on my way to the ward. I managed to convince someone to take me back down to her at 11pm though. By 24 hours post surgery I was walking down to the NICU myself. By a week in, I was walking upstairs and hills and just under a kilometre from the Ronald McDonald house to see her. I healed ok but I definitely didn’t rest for six weeks like you are supposed to after surgery.
“The word ‘stable’ became our trigger word. For two months, we were constantly told ‘She’s stable, but. But it’s touch and go. But Hydrops babies don’t survive. But she’s not likely to survive’.
“We were told every day for two months she probably wouldn’t make it. She had fluid tapped from her lungs every day for the first 15 days of her little life… increasingly removing more fluid each time. I had my first cuddle at 13 days, she had chest drains put in at 15 days meaning we couldn’t hold her again until they came out around day 58 when dad got his first cuddle. Day 55, we heard her cry for the first time when she was extubated. She had so many close calls in our two months in the NICU, from overheating, to being overdosed on morphine accidentally, on top of the challenges her own body was putting her through.”
A Christmas miracle
With each passing day, Penelope continued to show strength and resilience. Finally, Ashleigh and Josh felt they would be taking their little girl home.
“We were getting over 400mls of fluid off her lungs every day with the drains in, but it was between Christmas and New Year when she started making big improvements and her body started to heal.
“There was less fluid every day until we had no fluid and the drains were able to come out. We finally moved over to Queensland Children’s Hospital in the new year and spent another month over there, but every day was an improvement. Our hardest challenge there was weaning Penny off the pain medication. She went through withdrawals really hard and it was awful to watch.
“The week before we came home we finally got to try breastfeeding too and she did amazingly! To the point we were solely breastfeeding when she was discharged, which was an achievement in itself as we were told it was unlikely since her body was sending the fat in my milk straight to her lungs and she was diagnosed with a Chylothorax (a condition where fluid from the infant’s lymphatic system (chyle) leaks into the space around their lungs.)
“No one can tell us what caused the Hydrops. We’ve had every genetic test possible done and they all came back clear. She’s our little miracle baby who beat the odds. 5% of Hydrops babies survive. And Penny is thriving, not just surviving. Three weeks shy of her first birthday she even started crawling and has been completely discharged from the hospital outpatient clinics with the tick of approval that she’s a normal baby now!”
Happy 1st Birthday to Penny – and congratulations to Ashleigh and Joshua for also surviving an incredibly difficult journey as parents. We’re so thrilled for your gorgeous family and wish you all the best!
More birth stories from our Grapeviner mums…
- Birth Story: ‘We were told she may need an amputation’
- World Prematurity Day: ‘My baby was born at 23 weeks’
- Birth Story: ‘I have Cerebral Palsy and achieved my VBAC’
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