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Finn’s Story

 Finn, the heart of our family

“Finn was diagnosed when I was 20 weeks pregnant. He had a heart condition known as hypoplastic right heart, essentially Finn is missing the right side of his heart. We were told he most likely wouldn’t survive, and if he did his quality of life would be poor, we were better to terminate the pregnancy…
We chose to continue, Finn was to have a chance of life and we weren’t the ones to make up that decision for him.

Finn Charlie Corbin was born on 22nd September 2009 at Auckland Woman’s hospital, surrounded by a team of doctors, ready to begin his fight. His journey that would teach me what life really meant, to be thankful for all the little things. Our journey had begun.

Finn was taken to NICU within minutes of being born, I was left in a room, no baby to soothe or feed, and given a picture, the first picture of my baby. Finn was full of tubes but he was beautiful, the only picture we have of Finn without his zipper scar.

At four days old he had his first open heart surgery. We were told later that just before Finn had been taken into theatre his organs had started to shut down, this was Finn’s first major challenge, to survive, to fight, he had every odd stacked against him, but he did.

After a gruelling 10 hours we got to see our baby again, this time with an open chest, and covered in tubes his skin was hardly seen, but I smiled, he had done it, he was alive.

Finn wasn’t a “normal” hypoplastic child. He didn’t get better like the doctors had told us he would. Every day I would come and sit next to him and talk to him, or pat his head – we couldn’t cuddle him till he was three weeks old! Can you imagine that? You’ve had a baby but you can’t comfort him, what do you do? Well me I’m a practical person, I like to be in control. Here I wasn’t, but what I could do was feed my baby, yes I became a cow!
Hooked up to a double pump everyday to try and produce as much milk for our baby is the only thing I could do, ironically we are dairy farmers, and low and behold it turned out I was a pretty darn good cow! So for the next six weeks we lived in PICU, the intensive care unit in starship, as Finn couldn’t breathe without the aid of a breathing machine. I was a great cow, but our baby was so sick he wasn’t allowed it, so I did what any good mum would do and I started to freeze it all, it became my job.

At six weeks old we were given the news no parent wants to hear, that there was nothing more they could do for our fighter, and we should turn off the machines and let Finn go, The stubborn mum that I am, yelled and told them they were gonna try, they had to try, he had made it this far and they couldn’t give up on him yet. More tests were done, after the doctors realised I wasn’t gonna go down without a fight, and it was discovered that Finn not only had a major heart condition but that he also had three major airway problems, this combination had never been seen before, there was no surviving child like our son, not the best news you want to here, he was unique!

Luckily, an ENT doctor (the person I literally owe our sons life too) decided to try a tracheostomy on Finn. They inserted a tube into his throat to bypass two of his airway problems in the hopes it would mean he could be weaned off the breathing machine, and it worked. At six and a half weeks old our baby could breathe without a machine, I tell you that day our dreams came true, he had bet the odds again, he had fought, and he was still going to fight.

We then spent the next six months between 23b (heart ward) and PICU (intensive care). Finn had undergone his second open heart surgery, and now had to recover, grow and hopefully we could make life as normal as we could for our wee man.

At seven months old we finally got to take Finn home. Home to the place he had never been. He got to see his cot that had been waiting for him all this time, he got to play with his brother who was 19 months old when Finn made his debut in the world, he got to see the sky, sit in our sandpit, meet the cows, and each day see his daddy. Life was pretty good, in the grand scheme of things, the baby that doctors had said wouldn’t make it home did.

He came equipped with feeding tubes, and a tracheostomy, our house became a mini hospital, we had oxygen tanks in the house and car all ready to go, we had Starship on speed dial, but we did it. I remember being so determined to make life normal that I used to put both the boys in the car and head to the supermarket, armed with sterile gel and lots of wipes, in the hopes of keeping him somewhat bug free.

I did our groceries, and daily chores with a huge suction machine in tow, we couldn’t take Finn anywhere without this vital piece of equipment as it would suck the crap out of his lungs so he wouldn’t suffocate, yes crazy I know, but I was on a mission. People would stare at me, but I didn’t care, he was beautiful, tubes and all, he was alive, and I was gonna make darn sure his life would be just like any other “normal” child, he wasn’t going to live in a bubble with me as his mum.

We had a few hiccups in those early years involving good use of ambulances, helicopters and the amazing life flight team, which each time ended in yet another stint in starship, we became known as “frequent flyers”, but Finn kept fighting.

Doctors decided to try take Finns tracheostomy out at nine months old, not going so well and nearly losing Finn, they decided to put his tube back in and never touch him again till he was 21 – (meaning in doctors terms, never!). The stubborn mum came out in me again and I pushed for his doctors to try and remove the trachy, this time leaving just a hole open in his throat but no tube. Success, just before his 2nd birthday, Finn could breathe without a tube, and me, well I didn’t have to lug around a suction machine, it was a massive win!

We spent the next few years in and out of Starship due to pneumonia and bronchiolitis. Finn started to deteriorate rapidly, to the point we couldn’t go anywhere without a buggy as his body couldn’t cope with normal day to day exercise. He lost lots of weight and ended up not being able to eat orally due to having no energy to actually chew food. Finally the doctors agreed to give Finn the last stage of his three heart surgeries for his quality of life. They didn’t guarantee it would work, but it did, at three and a half years he underwent his last open heart surgery.
This went amazingly well, till 24 hours after it was found that he was in so much pain. The wires they put in to hold his chest together were rubbing on the bone in his ribcage, every time he would breathe, they would rub more and slowly were ripping him apart inside out, after me jumping up and down yet again, (the doctors by now had learnt that when I yelled it generally meant there was something wrong with Finn, call it a mothers instinct) luckily they listened and rushed Finn back to theatre to find the problem, and three hours later we got him back, with one meaty looking zipper line, equipped with so many sutures and staples. Nothing was going to break that puppy open. He was back, he could begin to fight again and recover from his last heart surgery. He did just that and five weeks later he came home.

This is now all that can be done for Finn’s heart. We have been told his life expectancy is 10-14 years past his last surgery. He now has had his peg removed (the tube in his tummy to help give him extra calories) and underwent surgery to close the hole in his throat.

To anyone that meets him, he is just like any other kid, until you lift up his shirt and see the scars that tell his story.

All together he has had 24 operations – 3 open heart surgeries, 2 strokes, and endless medical procedures, he’s our miracle.

He turned 7 years old just recently, a milestone that was never expected, he has no cure but my dream and wish for Finn is that he will live the most normal, and the best life we can give him, he has fought for it, to grow up with his three siblings, and to live, he has taught me to appreciate life, life’s too short to be anything but happy and I am one very prevailed mum to be able to be a mother to a child as unique as our Finn.”

Jen – Finn’s mum

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