Luana, 30 Weeks

Miracle Mum Kylie shares Luana's story:

“Throughout our pregnancy & at each scan we were told that our baby was ‘small’. We undertook blood test after blood test in a mission for answers however, there were no clear answers. We carried on with our pregnancy in hope that it was just in fact a ‘small baby’.

At 30 + 5 weeks I was working, picking Blueberries & finished early to head into the Hospital for a scheduled scan. On my drive in my thoughts consisted of what to have for dinner & what our plans for the weekend looked liked. Little did I know that sitting on the chair & having my scan would then lead to being admitted as our babies’ life was in danger…so many thoughts were running through my mind! I was then swept off to maternity & signing C Section approval forms….

The following morning after a scan it was all systems go and the C Section preparation was well & truly underway. Later that afternoon at 30 + 6 weeks our beautiful little girl, Luana was born & little she was weighing in at a tiny 620 grams. At first there was silence then she cried…I have never felt so much joy!

Our little girl was then whipped up into NPICU. Later that afternoon we made the exciting trip up for our first visit, my stomach was full of butterflies & excitement! She was on CPAP & had an NGT but for being so small was doing remarkably well. The following day the CPAP came off & she went onto low flow then by the third day she was off all breathing support - we felt like we were kicking so many goals!

As I suffered from preeclampsia, I needed stay in hospital for 4 nights with constant monitoring. Once I was discharged, there was a strange feeling of leaving the hospital without our little girl however, at the same time we knew she was in great hands.
Our days consisted of lots of little milestones, at 620 grams we celebrated all of them including her first poo! Although we were celebrating, there was something about Luana that kept the Doctors on their toes. There were blood tests & scans followed by ultrasounds & x-rays.

A test result of the placenta come back as Massive Perivillous Fibrin Deposition, an excessive deposition of fibrous tissue around the chorionic villi of the placenta which causes reduced growth of the foetus…after receiving these results it all made sense to us….The doctors however where not so convinced that this was the underlying condition.

We carried on celebrating milestones…reaching 1kg, taking Luana out on our own, performing her cares, moving from NPICU down to Special Care, coming out of the incubator to a heated cot & even celebrating the 2kg mark!! We honestly felt like we could almost take our little girl home however, the doctors were still not convinced which made us concerned.

Just after celebrating another milestone - Luana’s due date 24th April 2022, although we thought we were jumping in leaps & bounds we started to take steps backwards, more fractures in her little bones started to appear which meant we could no longer have skin to skin time & therefore had to come up with another plan for cuddles that kept her safe. We also moved back down to NPICU & Luana was placed back on low flow followed by high flow…we then knew this was something more serious. In a desperate search for answers our team of Doctors called in the Genetic team for testing. After being told that we may not receive an outcome, we proceeded with testing in the search for any answers.

After what felt like a life time….but was actually only 1 week we received the results back….our girl was diagnosed with an extremely rare genetic disorder….Infantile Liver Failure Syndrome type 1. Basically, everyone one is born with 2 LARS genes however, my partner & I each both have 1 faulty LARS gene, this does not affect us however Luana unfortunately received both faulty genes.

Although our hearts sunk & tears flowed with this result, it gave our Doctors answers to her condition. As this condition is so rare there is very little information available - even for the Doctors. After much discussion with the teams at the Royal Children’s Hospital in Melbourne it was agreed that the best option was to transfer Luana in hope for treatment. At this point of time my partner & I were in emotional overdrive & full of questions.

Luana flew to Melbourne from Hobart, I followed 2 hours later. My partner followed the next day. After meeting with the teams at the RCH it was revealed that Luana’s liver was failing her. After what was supposed to be a ‘simple’ procedure turned out to be far worse. After days of her being on a ventilator, many meetings with medical teams & at 102 days of age, on Wednesday the 1st of June my partner & I had to make the hardest decision of our lives….to turn our little girls ventilator off, she peacefully grew her angel wings in a perfect farewell.

Our hearts were broken into a billion pieces with a feeling of emptiness. It still feels like the past 3 months were a dream however, we have so many memories to treasure forever. As we are currently travelling we had Luana cremated, so she can travel with us.

As emotionally hard as our journey was we cannot thank all the teams at both RHH & RCH as well as Miracle Babies enough for their love & support it truly was amazing. Although our outcome was not the outcome we had hoped for we will treasure our little Luana in our hearts ♥️.”



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