Tonight we are super honoured by having Melissa Agius, founder of Learning from Lexie, share her story. Melissa’s princess was born with a severe brain injury resulting in Cerebral Palsy. She passed away in March 2016. Read on to find out what Melissa has learnt from her daughter …
People often tell my husband Simon and I we are amazing and we deny this. We are not amazing we are parents who have navigated one of the toughest paths to be given to parents, well a family really, and somehow we have come out the other side. Not unscathed but wiser and with a new attitude to life, love and family.
Let me explain…………
Seven years ago we were lucky enough to be blessed with a beautiful Prince, four years ago we were blessed with another handsome Prince and 16 months ago we were blessed with our princess. However, seven short months ago our lives changed when our Princess passed away. Let me take you back to 16 months ago.
I had a routine, ‘normal’ third pregnancy which resulted in me going into labour at work, yes you read correctly at work. Off to the hospital we trekked ready to welcome our third baby and very longed for Princess (only a handful of people knew she was a she). Everything seemed to be normal until my waters broke and there was meconium. Very, very dark meconium. This was the first indicator something wasn’t quite right. As labour progressed our baby went into distress and it was decided a caesarean was required.
Anyone who has ever had an emergency caesarean would understand the complete circus takes place around you. Within five-seven minutes of the decision being made I was prepped for surgery and we were on our way down. I was parked in the corridor while everyone rushed to scrub in and put on scrubs including my husband Simon. Whilst this happened I leant over and said to the gorgeous midwife ‘I need to go to the bathroom” to which she replied “hmmm you’ll have to go on the bed don’t worry”. Little did I know it was actually our babies head crowning. The midwife must have known as when the contraction came she said I’ll just have a quick peek and next thing I know she was yelling out for midwives, the Doctor and telling me to push. Simon appeared at that moment as they ran the bed around to the theatre. We didn’t even make it through the doors and our baby was born.
Immediately our Doctor started to perform CPR on our baby on the end of the bed, as she wasn’t breathing and there were no scissors to cut the cord. It was the longest few minutes of our life waiting to hear our baby cry but finally she did. We thought phew she cried all is ok.
Alexis Coral May Agius joined our family on June 24th at 4.50pm. At 7pm that night she was transferred to the NICU in Canberra without us. We were told we could wait for an ambulance to transfer me or go on our own. We decided to make our way there on our own. At this point we had no idea of what was wrong we thought some breathing difficulty which would get sorted, oh how wrong we were.
11pm, six hours after giving birth to Lexie we finally got to see our daughter and to touch her but we couldn’t hold her, that came the afternoon of day two. The next day would be one of the worst of our lives. We were told after extensive testing Alexis had an 80% chance of having Cerebral Palsy (CP) and no your baby will not die. Well phew thank goodness for that. Day four of Lexie’s life was torture, she was resuscitated twice and we were told we would have to turn off her machines and she would pass away, we wouldn’t get to take our baby home. So we called our immediate family in, we christened her and we said our goodbyes. Simon and I were not ready to let go yet and the hospital were amazing and told us to take our time.
Day five in the ultimate ‘up yours’ from our stubborn princess she started breathing on her own and never had to go back onto the CPAP machine. The next seven days Simon, I and our families were taught how to care for Alexis. Her prognosis was still grim and she was going home on palliative care. She was tube fed, required suctioning and well, frankly, the fact she was alive was an absolute miracle. Confronting questions leaving hospital like do you want to put in place a do not resuscitate (DNR) and would you like an autopsy are not things you should have to answer with a new born, but we did.
Home was scary however it was also great as Lexie thrived. She was showered with love and when I say showered I mean smothered. To this day I honestly believe her brothers, cousins, aunts, uncles, grandparents and fairy godmothers (there were a few) kept her alive. She knew she was loved and she loved us all in return.
Life was tough I’m not going to lie to you; I hated seeing perfect babies when mine was so sick but at the same time I was so thankful that I still had her. We tried to make life as normal as possible under the circumstances. Lexie had a total of five Ambulance rides and three hospital admissions, a lot in a short life.
We met some of the most amazing people, Alison Kent Neonatologist from the NICU, all the NICU nurses who cared for Lexie especially Wendy, Gill and Amanda were the angels sent to us in the form of NICU home nurses. There was also our amazing GP and all the doctors within the Surgery at Jerra mainly David Yates and Peter Cole. These wonderful professionals made life a little easier to tackle day in day out in those first few scary weeks at home.
When Lexie hit six weeks old and was still alive we revisited her care plan. Simon and I made the decision at about three weeks we wanted to remove the DNR, as we wanted to give our little girl every fighting chance we had and so that’s what we did.
Life went on and six weeks turned into two months, six months and beyond. We were amazed she was still here with us so we made the most of every moment. Don’t get me wrong, there were down days but more happy than sad days. As Lexie became stronger we started therapies with her and there were five angels in her life from this point. Dr Jo Edwards her paediatrician, Lou and Hillary from Ageing Disability and Home Care in NSW, and Lindsey and Nikki from Cerebral Palsy Alliance. These women made Lexies life comfortable and they never gave up hope for her and thank God for that.
At six months we decided we would have a big party for Lexie and thank goodness we did as it was the only one she got. We were also so blessed to have her for Christmas so we could celebrate her and her brothers and being a family. Nothing will ever top last Christmas.
We made it to eight months that in itself was a miracle. We celebrated every month like it was her first birthday. On 19 March we went for a family BBQ with my extended family, it was a marvellous day. Lexie got to meet one of my aunties and uncle who had not yet met her and was wonderful all day. That night my best friend came by and earlier in the week my other bestie had popped in for a visit with Lexie. We commented how great she was doing and life felt really good that night before we went to bed.
4.50am 20 March Lexie’s monitor alarm went off. It had never done this in eight months and 25 days. I was in bed with Mr 3 (at the time). I remember hesitating for a moment scared of what I would find.
Collectively Simon and I worked on our princess whilst we waited for an ambulance. They arrived after eight minutes and tried to revive her. “No electrical activity” still rings in my mind. To anyone who doesn’t understand, that meant she was gone, there was no brain activity. Clinically brain dead. Simon and I without saying a word to each other shared a look and told the paramedics to stop, to let her go. We wrapped her up and held her until we had to say goodbye. Thanks to our beautiful GP who was awoken by the Police calling him, he came to our house and sat with us. He completed all the necessary paper work to make it a pain free process.
March 20th 2016 at 5.05am, eight months and 25 days after arriving into this world Lexie left it.
Life changed that day. A piece of us died with her, but the people we are now because of her is OK too.
We needed a legacy for our princess and so we set about working out what that was. We set up Learning from Lexie and run family photo sessions to raise funds for CP aligned charities and services. We had to do something with photos as we have 1000’s (no exaggeration) of her. So this is exactly what we did. We had a successful first round of photos called “Babies in Beanies”. We raised a staggering $8000 which now goes towards funding a social worker to help newly diagnosed families of people living with CP. We are about to do our second photo session which are family photos in time for Christmas called “Capture the Moment, the more the merrier”.
The main thing we want people to know is that whilst what happened in horrendous and really horrible we wouldn’t swap a second of it and we would do it all over again in a heartbeat. So do me a favour or five:
- Tell your family and friends who mean the world to you that you love them. No reasons – just do it.
- Be kind to each other especially as new mums. Life is full of pressure and we don’t need to add it onto each other, we need to support each other.
- Work out what matters in life. Pretty soon things which seem so big and cumbersome will no longer look that way. Life really is short so live it and enjoy it.
- Next time you see a person in a wheelchair with CP don’t pity them, stare or point. Instead, educate your children on what a miracle they are to still be alive and go and tell that family they are amazing. If only you knew what it took to get that person there you would kiss their feet. These families are used to be stared at not commended on a great job. Teach your children empathy and understanding and just because that child or adult looks different on the outside, on the inside they are the same.
- Don’t put off having photos taken. If it wasn’t for our constant taking of pictures with Simon and I in them (we both hate having our photo taken) as well as the boys we wouldn’t have the glorious memories to look back on. There is always going to be a reason not to do it, look past it and do it.
Thanks for allowing me to share and reading to the end.
Love and hugs
Support Melissa and her cause by following Learning from Lexie on Facebook.