Our daughter Ela was born on 28th of August 2015 in Sydney as the most loved and cherished child, 2.3kg of joy. Since 20 weeks of pregnancy we knew Ela will have to fight hard for her life when she is born.

At 20 weeks ultrasound we found out we are expecting a baby girl, but we also got the news we didn't expect. Ela had a serious congenital heart desease (CHD). She was diagnosed in utero with two heart defects: Tetralogy of Fallot and Atrioventricular Septal Defect (AVSD). After consultations with specialists in paediatric cardiology we decided to give Ela a chance.

All this happened just a couple of weeks before we were meant to travel to Slovakia to visit our family. Our obstetrician supported us and we took our Ela to Slovakia where we come from. We had the best time with our family and friends and Ela was there with us! We will always cherrish this time in our hearts.

     Although we needed to prepare what will happen in a couple of months, we decided to enjoy our pregnancy with Ela as much as we could. We were praying for Ela constantly and our family and friends with us. There was a hope that Ela would be able to grow up as normal child with slight limitations.
     After we got back to Australia whirl of appointments began. Amniotic fluid was building up and in the end our Ela was born at 36 weeks and 4 days prematurely when the water broke.

     I got to hold Ela for exactly two seconds and then it all started.
     She was stabilized and transferred to Children's Hospital in neighbouring building. Ela had her first heart operation when she was only two days old. The aim was to place a shunt to allow proper flow of blood to lungs and the operation went well. Ela was then moved to Paediatric Intensive Care Unit to start her recovery. We also found out her heart had another defect: leaky valve (valve regurgitation). Everyone hoped after this operation she will be able to improve and grow until she is ready to have her other heart defects fixed. But she was improving very slowly and there were more complications coming up. It started to be apparent her heart is not able to support her enough and there were other issues going on. After more tests she was clinicaly diagnosed with CHARGE syndrome and her blood sample was sent for genetic testing. CHARGE syndrome is a very complex syndrome which consists of combination of defects. Ela had severe heart defects, coloboma of the eyes, bilateral choanal atresia (blocked airways), ear abnormality with probable deafness. We've never heard anything about it, but we were determined to help Ela as much as we could. Nothing changed for us, she was the same baby, our precious daughter.

     Ela's cardiologist slowly started to prepare us for the option Ela's heart valve is not fixable and they will have to replace it when she is at least 4-5kg. This is a very risky operation with life long consequences. In the meantime Ela's health improved enough so she could have the CT scan done. The CT results showed Ela had two blood clots in her brain and one in the tummy, her airways were blocked with a bone. She was put on blood thinning medication straight away and it was apparent there needs to be a MRI scan done to get more information about Ela's situation. At that point we knew that every - even a small operation - would be life threatening to Ela. A palliative care was offered to Ela. We called our parents to come to Australia. In the meantime Ela was surviving, but she wasn't putting any weight on, because she was fighting for her life. She was on breathing support for her whole life and was getting the best 24/7 care at Paediatric Intensive Care Unit at Children's Hospital at Westmead. The MRI scan was done and the results were crushing. Ela's heart valve couldn't be fixed, it needed to be replaced. Her brain wasn't developed well and couldn't process what she was seeing. She would probably never learn to walk or speak. The PICU team organised for us and our parents a meeting with all specialists involved in Ela's care. Ela's situation was summarized and after this meeting we knew we will have to let Ela go.
     Even though this thought was unbearable, we knew what's the right thing to do for Ela. Our hearts didn't want to hear it. But we had to think of Ela. She was suffering and had no line of sight to recovery. We were moved to a private room to spend the final days with Ela.

I remember the last two weeks of Ela's life, they were the best of her short life. She was stable. We have such a lovely memories from this time with Ela and our parents.

     Our beautiful Ela has peacefully passed away on the 26th of October 2015. We were left heart broken and empty. We had no idea how are we going to go ahead without her and how we will be able to cope with this at all. There are no words to describe the sadness and emptiness.

     We know Ela's life had a meaning. It has not only made us and our relationship stronger than ever but Ela opened our eyes to new worlds. She has inspired us to carry her legacy forward through helping others and keep her memory alive in this way. Thanks to her we met new amazing friends and Ela's little friends many of which are fighting their own battles with unfair medical conditions.

     Thank you dear family & friends for supporting us through the hardest part of our lives.

     Thank you dear PICU team and Cardiology team for looking after Ela (& us) so well, we will be forever grateful. Thank you Heart Kids NSW for being there for us when we've most needed it.

     Thank you Heart Kids Parents & Charge syndrome groups on Facebook for showing us compassion and support.

     Ela has inspired us to launch the 'Love From Ela' platform through which we will be running activities aimed at helping raise awareness and support for various great causes. You can follow us on Facebook to see what we're up to at the moment.

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Kristina & Viktor

Parents of Ela