A beautiful but broken heart

Ky and Mark and their children Daniel and Bella.
Ky and Mark and their children Daniel and Bella. 

On the surface, we are an ordinary family. Two parents, Mark and Ky, who are completely in love and two bright, happy, confident and secure children who are each others best friend. Scratch just below the surface and you will find a family who is grieving the loss of three children.

Bella, our eight-year-old had a twin sister, Nikki. She was born far too early and sleeping. In the midst of grieving her loss, we discovered I had been carrying twins and Bella was still hanging in there, determined to make it. She was born at 37 weeks at a very healthy 8lb 7oz.
Next, along came Daniel, now six-years-old. He was born at 36 weeks after many complications, weighing a whopping 13lb2oz and needing just a little help in special care.
Imagine our delight when we found out Sam was on his way. Unfortunately, due to maternal pneumonia and multiple organ failure, Sam couldn't survive and was also premature and born sleeping. It felt like we were never going to get the big family of our dreams.

In 2007 I fell pregnant with Ruby. It was a dream pregnancy with gestational diabetes being the only complication. That was, until the sonographer was unable to get a clear picture of Rubys' heart at the 19 week scan. We had another scan a few days later and left thinking all was well. It wasn't until my obstetrician rang four weeks later informing me that I had to travel to Sydney for an appointment with a paediatric cardiologist that we had any inkling that anything was wrong.
Ruby was diagnosed with a combination of severe cardiac issues which ultimately gave her a 70% chance at life with several open heart surgeries in her first three years. From then on, I was focussed on making sure that she was born in the best possible condition to undergo these procedures and survive.
On January 22, 2008 at Westmead Public Hospital, Ruby Leisha was born by elective caesarean weighing in a at healthy 9lb 8oz at 39 weeks gestation. She was transferred to the childrens hospital next door within an hour of birth. She was beautiful. A thick mop of black hair, little chubby cheeks and flat nose just like her brother and sister.
She was almost 3-days-old and underwent her first open heart surgery
Ruby remained in the HDU until she was almost 3 days old and underwent her first open heart surgery. During the surgery, it was discovered that she had hypoplastic left heart syndrome (the left side of the heart is poorly formed and the left ventricle and aorta are abnormally small), cortication of the aortic arch (narrowing of the aorta), pulmonary and aortic stenosis (pulmonary valve does not open properly and the aortic valve is narrowed), multiple ventricular septal defects and all of her arteries were as fine as pieces of cotton. Her little heart was remodelled into two chambers and her arteries and aortic arch replaced with goretex. She was taken to the paediatric intensive care (PICU) in a critical condition where she was loved and looked after by a wonderful team. Her chance at life was revised to 30% after her first surgery as they realised her initial diagnosis was overly optimistic
All was going well. Her heart was coping better than expected and it wasn't until almost 2 days after surgery she suffered a setback which required her to be placed on ECMO (bypass) to give her heart a rest. Another surgery dealt with bleeding the next day and she spent a couple of days resting and improving. Her stats were getting better apart from a mystery infection which seemed to be giving her a little trouble causing little bruises to form on her extremities. During this time, she was never left alone. There were always at least three people by her side. She was sung to, talked to, treated with respect and lovingly stroked whilst being encouraged that she was doing well.
By the time she was eight days old, she had been given all of the rest possible and after trialled reduction of ECMO support, the decision was made to remove her from ECMO and get her little heart to take over fully again. She had been such a little fighter that although the risk she wouldn't make it through the surgery was high, she was expected to live based on her past record.
During this time, Bella and Daniel were introduced to Ruby. They did not see her prior to surgery and only have photos and video of what she was like. We live three hours away from Sydney with no family in NSW. We were unable to have the children with us and Mark had returned home to look after them and return to work as his employer at the time insisted. I was being supported by the lovely staff and other residents of Ronald McDonald House, Westmead. It was a very lonely time for all of us.
On the January 31, I said goodbye to Ruby at the door to the operating theatre as she went into her final surgery. A little tear rolled down her cheek which broke my heart. After a few hours, I finally received the call. She was out of surgery and her surgeon wanted to speak to me. I bolted up to the PICU, anxious to see my little girl.

What greeted me was deja vous. I had been in this situation before when ushered into a room to tell me that my mother had died 12 years earlier. I was alone then too. Her surgeon, anaesthetist and favourite nurse were all waiting. They were all crying as they told me she had made it through the surgery, seemed to be coping well on her own, only to slip quietly away on her way back to PICU where they could do very little to bring her back. It was as if she chose her time to go. My precious little girl had left us at only 9 days of age without ever waking again.
The next few hours were a blur of phone calls, waiting for Mark to drive the three hours from home to be by my side, talking to the social worker and finally, releasing her body to the care of the police for transport to the coronor. I didn't want to let her go. She was so beautiful and looked too perfect to have gone.
Just over a week later, friends and family gathered to say farewell to a little girl who, although only met by very few, had touched the lives of many. We celebrated her short life and tried to give people an idea of what kind of a life she would have had if she had survived. One full of surgeries every time she grew due to having so many artificial arteries, frustration at not being able to be very active and an expected life span of less than 20 years. We released balloons, blew bubbles, laughed, cried and honoured our precious girl whom we had the privilege of having in our family.
So, beneath the exterior calm and happiness, there is a grieving family who will never forget that they should have three more standing with them. We have chosen to make life a pleasant experience and to focus on the good in all of our experiences. We have chosen to believe that Ruby knew her life would have been full of pain and frustration and was brave enough to know when it was all going to be too hard and quietly slip away when the least possible number of life saving measures were available. Our little gem was a fleeting presence on this earth, but an eternal presence in our hearts.
Sleep sweet baby
Take your rest
God called you home
He knew it best
In memory of our precious gem, Ruby Leisha. 22 January - 31 January 2008. At rest.

During Ruby's time in PICU, she used one unit of plasma every hour as once it is thawed, it expires within an hour. So, approximately 120 units, not including the blood used during surgeries.

It was as if she chose her time to go. My precious little girl had left us at only nine days of age without ever waking again.

Without those donations, she would have survived only a few days. I am so grateful for the short time I had with her. If not for the blood, she would have been taken from me so much earlier. If not for the efforts of the amazing medical team, I'd never have even been able to hold Ruby.

Many, many thanks to my Obstetrician, Endocrinologist and GP and Ruby's Paediatric Cardiologist, amazing Surgeon, PICU team, HDU team and the Staff of Ronald McDonald House, Westmead. A huge thank you to those who donate blood, whether it is once or on a regular basis - thank you.
Please consider donating regularly and make enquiries about donating plasma. Plasma donations can be made more often and although the actual donation takes longer, it is what can make the difference to a family like mine.

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