Lennox’s Story

Lennox 2Our miracle son entered this world in 2012 and changed our lives forever!

Our world started to spiral quickly out of control at 27 weeks pregnant when our son was diagnosed with a collapsed lung due to a pleural effusion. We are from Tasmania so we were immediately sent to the Royal Women’s Hospital in Melbourne. As it was just meant to be a day visit, we decided my husband would stay home with our two year old and my sister would accompany me to my appointment. This is how underprepared we were.

“You have a very, very sick baby and he may not survive” the doctor said. ” What? Was I in a dream? But I can feel him! How can he be sick? Is he dying? The agony of being given three choices, and ultimately being asked to play God, was gut wrenching! With my baby’s future uncertain, I planned to see through what I signed up for when I chose to become a mother. I was going to fight for my baby….., and so our journey began!

I had three amnioreduction & thoracocentesis procedures which removed amniotic fluid from myself and also from my unborn baby’s chest cavity to test for genetic disorders but all tests kept coming back clear. So why was this happening? Why was my unborn child gravely ill?

Finally on my second amnioreduction, after removing two litres of amniotic fluid and 150mls of fluid off my son’s chest a large mass, a tumour was found…., was it cancer? It was the longest ten minutes of my life as we waited for results. If it was cancer, they said there was nothing they could do. So we waited, with silent tears rolling down my face. It wasn’t cancer but they had no idea what it was! A day later after extensive research we had an answer – it was an extremely vascular haemangioma! It was the first case in Australia and third in the world. Due to its vascularity it was deemed inoperable as he would bleed to death. So the aim was to keep him inside as long as possible but worsening polyhydramnios meant that what should have been a drainage every ten days narrowed quickly to just three.

Fluid was starting to go to his head and he was becoming distressed so at thirty two weeks he needed to come out. I frantically rang my husband who had only just left Melbourne a few days before to be with our two year old son and asked him to to come back quickly.

At 2:55am our son was born crying, which was incredible considering how sick he was and with a collapsed lung. I met my husband in Recovery at 3:15am and I instantly sent him to find our son who had been whisked away to be
worked on by a team of doctors. About 9pm that night the transport team with my husband, mother and sister bought my little boy to my room before they transferred him to The Royal Children’s Hospital. It was three days before I saw him again. My husband constantly travelled between the two of us at separate hospitals!

We needed to give this fighter a name. A few were considered as I studied photos of our little boy from my husband’s phone. I needed something strong. We settled on Lennox Raphael which means: strong, willing and healer of the sick.

I met my little boy properly for the first time three days after his arrival. There were so many machines and tubes and cords I didn’t even see him – this tiny little boy amongst things I’d never imagined seeing. He turned his head and opened his little eyes as if he knew his mummy was finally by his side. And there I stayed for three long months in NICU.

He was treated initially with a drug called Propranolol which was aimed at shrinking his tumour. He also had problems with a right-sided chylothorax for which he had two chest drains inserted and they remained in for about two months. The Propranolol wasn’t working – in fact at fourteen days of age he went into cardiac failure. The nurse rubbed my arm and said “We’re doing all we can”, as I watched doctors working on him as his heart rate plummeted and he turned grey. After about an hour he was stable again. I went back to my little room at Ronald MacDonald House, collapsed at the foot of my bed and cried. Why was this happening? What did I do wrong!? I felt this was getting too tough and I couldn’t see how my little man was going to overcome so many obstacles. I made the heartbreaking decision that night that I would go into his room in the morning and tell him, “If this is too hard, you don’t have to fight. I don’t want you to hang on if you can’t.”

That morning, feeling sick to my stomach, I entered his room and found that our little boy, despite almost losing him the night before, was thrashing about that cot as if to say, “I’m not giving up yet Mum.” I told him instead, “As long as you’re fighting, I’m fighting.”

Lennox 3It was decided to start a new treatment in the form of chemotherapy. My baby wasn’t even meant to be born yet and
he’d be starting chemotherapy at thirty-four weeks gestation! All his hair, eye brows and eye lashes fell out. His little bowel stopped working from the chemotherapy, his tummy blew up like a balloon, not to mention the constant chyle (lymphatic fluid) pouring from his chest drains.

Three long months passed and it was finally time to bring our little boy home to Tassie! He had his very own medical plane transfer him to the Launceston hospital where he would stay for two weeks while I tried to teach him to breast feed. He did breast feed and we were finally able to go home.

He was in and out of hospital for the first year mainly due to bronchiolitis, common after being intubated for months from birth. We finally had built our son’s health up and he was now ready for the big one – open heart surgery. It was always on the cards but I was hoping his little heart would fix itself but it didn’t, it got worse. So at eighteen months of age, back to Melbourne we went. He had his pulmonary valve ballooned at twelve months of age but after further assessment, more work needed to be done.

His surgery went well and we met him in intensive care, relieved it was all over. Or so we thought… it was then
revealed that Lennox couldn’t breathe at all. His lips turned blue and he was on full oxygen support yet again.
He had a pericardial effusion (fluid around his heart) and swelling from the surgery and also had developed
a nasty respiratory virus, RSV, which all together had closed off his airways and he was put into isolation. Time
again would prove to be our saviour, two months in fact. He ended up back in theatre a total of three times, to drain fluid and also remove sutures.

LennoxThis world of hospitals can do two things – break you or make you stronger. It’s made me so appreciative of life and it made me realise how some people fight so damn hard to be in it.

Lennox is one incredibly lucky little boy and I feel totally blessed and lucky he’s come into our lives because he has
taught me things I would never have otherwise wanted to experience. You never know just how strong you are until you go through heartache.

Lennox is now 2 1/2 years old and doing so very well. Lennox is such a character. Doctors used to joke that it’ll be Lenny’s way or the high way, and he and only he would dictate what would and wouldn’t work! He’s incredibly strong bodied and willed. He’s had to be, but I am forever grateful for his fighting spirit. He loves to laugh and have a good time, he is very social and is obsessed with tractors and trains. He just adores his big brother Seb who is four and is very protective of Lenny. They are best mates. He amazes me every day! He always has a smile on his cheeky face!

We don’t know what the future holds for our Lennox but one thing is for sure – we’ll never give up, because we know he won’t!

Written by Lennox’s Mum, Alex

Victoria & Tasmania