Scarlett’s Story

Scarlett babyThe decision to have a third child was not one we took lightly. Both our boys had been born prematurely, Hunter at 31 weeks and Campbell at 34 weeks. We asked ourselves if we could go through another period of having a baby in hospital and if we could put that stress onto two children and onto our family members. We decided that whatever happened we could work through it as a team and we were lucky enough to be blessed with our third pregnancy.

At the 20 week scan, we were excited to find out that our baby was a girl but we knew something was wrong when the ultrasound technician spent a lot of time taking images of her heart. She wasn’t sure if it was the angle of how Scarlett was lying but it appeared as if her left ventricle was smaller than her right. To be safe we were sent to Melbourne later that week and it was confirmed that Scarlett had congenital heart defects.

We were counselled on termination, and given statistics, diagnoses, prognoses and medical terms that flew over our heads. We were beside ourselves with grief and despair, and our family was rocked to its core. However, during that night, Dale felt Scarlett kick for the first time so we knew that whatever happened, we had a strong little fighter on our hands.

At 35 weeks I was admitted for monitoring as Scarlett was measuring small and with my history of preterm labour, it was decided that they would like to keep a closer eye on us both. Four days later, on the 28th August 2012 at 12:20pm, we welcomed our gorgeous girl into the world. She came out with a mop of thick black hair, the reddest lips and screaming!

She was taken by the NETS (Newborn Emergency Transport Service) team to The Royal Children’s Hospital at three hours old while I recovered at the Royal Women’s Hospital. Finally at four days old I got to hold my little girl for the first time. With just a drip in her arm it was difficult to comprehend what lay in store, and how sick her heart really was. She was perfect – tiny but perfect. She was scheduled for surgery the day after Father’s Day so we moved across to emergency accommodation, which was our home away from home for the next four weeks.

At six days old we wheeled Scarlett into Pre-Op and we left her in the arms of the medical professionals. An agonising ten hours later, we received the call from cardiac surgeon, Christian Brizard, saying that she had come through surgery. It was more complex than first thought with a hypoplastic aortic arch repair and a defective mitral valve. With Scarlett at 1.9kg, he was working on an organ the size of a walnut.

Scarlett in PICUWe saw her at around 9pm that night. Instead of one IV drip, there were numerous. Her chest was open and instead of one nurse, there were two PICU doctors and more than four nurses. We were shell shocked. How could our girl that appeared so well the day before now look so ill and fragile? How could one so little, survive such a battle? There were many tears and many hugs, many prayers and many jokes – anything to survive in an abnormal environment. Scarlett’s room was filled with toy elephants – a symbol of luck and strength. Her room was the best dressed room in PICU! Scarlett battled on and we settled into a routine.

At just over four weeks old, the words ‘moving to the ward’ were mentioned and on the 15th October we made the huge move out of our PICU comfort zone to Koala Ward. Scarlett, though, had other ideas and after bouncing back and forth and with a few MET calls, she was rushed back to PICU where she was again ventilated and her second surgery, this time to repair her mitral valve, was planned. Scarlett underwent this surgery and her mitral valve was once again repaired. Our baby was no longer purple and mottled with a heart rate over 180 – she was pink and beautiful with a normal heart rate. After only a comparatively short two week stay in PICU, we were back on Koala Ward and by late November we began making plans to bring her home.

Campbell’s fourth birthday was approaching so Bryn Jones, Scarlett’s cardiologist, and Bettina, her care manager, worked together with us in organising day leave so that she could attend his birthday party. However her routine echo prior to discharge had found that her mitral valve had now become severely narrowed, causing increased pressure into the lungs and it was decided that a third repair attempt was to be made. Instead of bringing our girl home she was taken back to PICU and underwent her open heart surgery on the 13th December 2012.

After a mammoth thirteen hours, we received the call from Christian. This was her last chance. The repair did not go well so he replaced her mitral valve with a bovine valve – the first patient ever to have this type of valve used as a mitral valve. She was returning to PICU on ECMO. We had seen Scarlett fight so much – how much more could she go through? Being the first, there were no cases, no history or statistics for us to latch onto, just hope and faith in the feistiness and courage of Scarlett.

Four days later, she was taken off ECMO. We knew the first hours were critical but as she appeared stable and was in the best of hands with her nurses, we quickly went downstairs for lunch. All of a sudden we heard a page “Cardiac Surgery immediately to PICU”. We ran, with absolute fear, knowing that something was not right. We were ushered into the meeting room where we were told that Scarlett had gone into cardiac arrest and was being put back on ECMO. We sat and watched helplessly. Good friends that we had made in the hospital gave me a hair brush so that I could brush her hair…I was so frightened to touch her as she had been cooled, but this was my way of having contact with her. I would sit and brush her hair; the nurses would put clips in it. Anything to make a terrifying situation have some sort of normalcy.

Scarlett and SashaNow as I sit and write this, almost 22 months on, the emotional pain is still so raw. We were told that the next time they removed her off ECMO it was a “one way de-cannulation” – there was no going back on. It was up to Scarlett and the odds of her coming through and surviving a year was about 10%. I looked at our nurse who had come in with me and she said, “He is giving you odds…no one knows Scarlett’s character”. We knew we had a girl who liked to do things her way, who was stubborn and who was strong. For the first time in her entire hospital stay, her room doors were closed. We called our families in and discussed what we wanted afterwards – just in case. The nurses who had become our surrogate family visited us, hugged us, shared tears with us and prayed. Those nurse’s words proved to be prophetic and Scarlett came off ECMO, was stable and we were able to celebrate her first Christmas in PICU with her RCH family of nurses, doctors, as well as her excited big brothers.

Finally after a 5½ month roller coaster we were able to bring our girl home. Our family home was complete and her brothers adored her. Except for a few short stays in hospital due to viruses, our life has resembled that of a ‘normal’ family. Scarlett now attends crèche one day a week and loves music class. She is still a feisty little miss and loves being the centre of attention (we blame her extended stay in PICU for this!) Tutus, yoghurt, her baby doll and trying to join in footy with her brothers are just a few of her favourite things.

I wish that I could say her roller coaster is over but it is not. It will continue throughout the rest of her life. In January of this year her mitral valve had again become severely narrowed. An experimental procedure was attempted to balloon her valve to buy her some more time before requiring another replacement. Again, thanks to the pioneering surgeons and their phenomenal skill, this was a success and Scarlett will undergo her next surgery, to replace her mitral valve with a larger one, sometime later on this year.

Scarlett and boysThe hospital is our second home. Scarlett is still frequently monitored by cardiology and also has involvement with a number of other teams including the dieticians, OT, speech, physio, genetics, neurology, general medicine and ENT. It is also a place where our boys feel comfortable, where the staff and volunteers care not only for Scarlett but for all of us. Dale can joke with the nurses, I can chat to other heart mums and feel safe and understood and not alone. We have made lifelong friends through our time there and for that we are forever grateful. Of course there is not a day that goes by that I am not filled with anxiety about her future, wondering …. if a cough is just a cough or the start of something more sinister …. what her heart is doing as she begins walking …. how I will juggle the next surgery .… what impact this has had on her brothers .…but then she smiles and she laughs and she gives you the best cuddle. And it’s all worth it.

Written by Scarlett’s parents, Dale & Sasha

Victoria & Tasmania