Written by Audrey’s mum, Honor
I found out I was pregnant after a nerve-wracking IVF journey, and was so excited so see my baby at the 13 week scan, I couldn’t have possibly imagined hearing that something could be wrong. I walked in expecting to see my perfect little peanut bouncing around, but was told that the heart looked like it was on a strange axis. We were reassured that this might be some variant of normal, but that it would be safest to have another scan soon. At 16 weeks the scan still had no definitive answers, but her heart remained on a strange axis. Again, we booked in for another scan. At 19 weeks, I saw my baby’s stomach next to her heart, and the diagnosis was made. Unlike most CDH-er parents, I had heard of CDH before, and absolutely terrified of what this would mean for my little one.
I went to a Maternal Fetal Medicine (MFM) specialist the following week, who confirmed the CDH diagnosis and placed us in the moderate-severe category. We spoke to many different doctors and surgeons, who all weighed in on what life might look like if she survived. We were extensively counselled about our options – and that we didn’t have to continue with the pregnancy if we didn’t want to. I found those conversations particularly confronting, because this pregnancy was so deeply wanted. We weighed up all the statistics we had been given, and for us, a 40% chance of bringing home our baby was worth fighting for.
A few weeks passed and I had an MRI, which confirmed that she had stomach, spleen, liver, and small and large intestines up in her chest cavity. We were counselled on the fact that having liver up was a poor prognostic factor, but our team at the Mater Hospital (Brisbane) constantly reminded us that numbers are just that – all babies are different and will all take their own paths once they arrive. My obstetrician/MFM specialist and MFM midwife were absolutely outstanding throughout the pregnancy and helped ease my worries, answering all of my thousands of questions at each appointment. And most importantly, they gave us hope.
After a very long and stressful pregnancy, our baby girl was born, screaming her little lungs out. My obstetrician put her on my chest for a minute or so before the neonatology team took her next door to stabilise her. Saying goodbye to my baby was excruciating. My partner was sending me updates while I stayed in birth suite waiting to be cleared to go up to see her. I briefly saw Audrey, before we were told more doctors were coming to see us. At just four hours old, we were told to prepare, and make as many memories as we could, as things weren’t looking good.
The Cardiothoracic team from Queensland Children’s Hospital (QCH) came to discuss putting her on ECMO; we sat waiting for what felt like hours before we heard she was stable on ECMO at QCH. The next afternoon, at just shy of a day old, the surgeons took her to theatre and did her hernia repair.
After six days on ECMO, the huge machine and scary tubes were removed. Audrey was put on the high frequency oscillator ventilator, and stayed on that for three weeks. She was then trialled on conventional ventilation and at four weeks old we had our first cuddle. After a little over a week, Audrey was extubated to BiPap. Eventually she started on high flow oxygen, and when she became stable on high flow, Audrey was moved to the ward. After seven weeks of feeling like my baby belonged to the hospital and the machines, I finally got to sleep next to her cot and really feel like her mum. For the last five weeks of her hospital stay, we focused on lots of cuddles, breathing and feeding.
Audrey’s hospital stay was complicated by a number of UTIs, pneumonia, a chylothorax, severe pulmonary hypertension and blood clots in her legs and neck. It was definitely a challenging time, but the staff at QCH supported us so well and encouraged to celebrate the little things – like the first time bub does a poo, or opens their eyes, or has another line removed!
After twelve weeks in hospital, we were finally able to bring our baby home. She came home on oxygen around the clock, and a nasogastric (NG) tube for feeds. At 7 months old, Audrey no longer required her feeding tube and oxygen! Now, at 10 months – looking at her, you wouldn’t know the crazy adventure she has been on. Audrey is the happiest little human, and we are so proud of everything she has overcome.
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