Help Owen have the best life he can have!

Wednesday, June 13th 2012, our lives became that much richer with the arrival of my 3rd beautiful nephew, Owen Frank William Kerr.

Even before his arrival we knew that whoever was cooking in my Sister In-law's ever increasing belly was going to be a strong willed little person.

His birth bought great joy to our lives, but it was clear from very early on that our Owen was going to be extra special.

At only 10 weeks old Owen had contracted his first cold and while at the GP a slight heart murmur was picked up. After numerous test, we were told that Owen had a total of 7 congenital heart defects; 3 ASD (Atrial Septal Defect) and 4 VSD’s (Ventricular Septal Defect). At the time these were non-life threatening and the smaller holes would likely close by themselves over time and the larger ones may need to be closed via surgery when Owen was a little older.

I soon gave Owen the affectionate nickname of Trouble (which followed on from his older brothers, Mischief (Loghan) and Mayhem (Dylan)), as you could tell that he had trouble on his mind when he’d send you a cheeky sideways smirk and he’d have that telling sparkle in his eye.

While Owen was born at 9 pounds plus, as he grew it became apparent that there was more in store for him. Due to his small features and unique stature it was suspected that Owen may also have to contend with having a genetic disorder. After more numerous tests, which this time saw US and UK specialists become involved, in October 2014 the confirmed diagnosis of Noonan’s Syndrome was delivered. Noonan’s Syndrome and heart defects come hand in hand.

The next month bought a new change for Owen, this time in the best possible way, when he added Big Brother to his resume with the arrival of his baby Brother, Leighton (my new Chaos). He embraced his new position of protective Big Brother with gusto, which bought a happy relief to everyone in an otherwise uncertain time.

Unfortunately, the happy times weren’t to last long.

On 30th April 2015, during a cardio catheterisation procedure on Owen’s heart it was discovered that he was also fighting Pulmonary Hypertension (PH) – a lung condition which there is increased pressure in the pulmonary arteries that travel from the heart to the lungs. It is a rare and incurable condition that becomes worse with time. Owen was only 2 years, 10 months old.

Between April 2015 and August 2017, Owen has battled bravely through numerous medical procedures, countless specialist appointments, untold amount of tests, liters of medication, and regular hospital admissions, often requiring days sometimes weeks stays at a time.

However, the worst was yet to come…

In August 2017 Owen contracted a nonvaccinated strain of influenza, which landed him in hospital. This quickly turned to pneumonia resulting in respiratory failure. Thankfully for us, his Mum knows him better than anyone and could tell something wasn’t right. Her actions, along with the quick response from hospital and ambulance staff eventually saw Owen regain control of his breathing. We were very close to losing him.

Sadly, this episode was to be the start of a downward spiral.

Between August and Christmas, Owen was constantly in and out of Starship Children’s Hospital battling the after effects and the damage done to his little body following the Flu respiratory failure and in December his parents were given the devastating news that Owen was in the early stages of heart failure and were advised that Owen will need a heart and lung transplant, which would see them having to relocate to Melbourne to have this done.

The New Year came and with that came a new Starship admission, this time for a 3 night stay to run tests. Owen's PH had become worse and his heart was now showing severe signs of stress. He was now on oxygen at night and another new medication to help his heart.

His specialists also wanted to start him on a new PH medication (he was already on 2), but would have to do some fighting for medication funding. February saw Owen back in Starship for tests and his parents met with a team from Australia, which included respiratory specialists, PH specialist and a lung transplant surgeon for some second opinions and to see if they could add any input into Owen’s care.

The funding fight was won and in March his 3rd PH medication was approved. The new medication would be trialed for a few weeks administered through a temporary PICC line in Owen’s arm and placed into a 24/7 pump, after which Owen will have a central line put in under general anesthetic, however due to the weakness of his heart this would be a very risky surgery.

Owen went into Starship for the 2 week trial in April and 4 weeks later returned home with the PICC line still in place. While the new medication had made his lungs stronger, his heart was still rapidly deteriorating and would likely not hold out during a general anesthetic for the Central Line placement. The only options left for Owen was to carry on as they were and to keep Owen comfortable and manage issues as they came up; the other was to see if Owen was a good candidate for the heart and lung transplant.

Through all of this, our Owen continued to bravely take all that was thrown at him, including staph infections, body rashes and fluid retention.

On Tuesday 12th June came the news that we had hoped never to hear. Owen’s cardiologist explained that she was extremely concerned with Owen's health regarding the latest results from the recent bloods, echo-cardiogram and ECG. While the blood vessels within Owen's lungs were opening up as anticipated with the range of medications he had been taking, his heart unfortunately has not responded and was not coping as planned. Owen's heart is still continuing to enlarge and showing further signs of severe stress.

To add to this, the Melbourne Transplant Team had examined Owen's file and recent test results and sadly declined the request to have Owen added to the transplant list. Their primary concern being that with Owen's current situation he would not be able to last the waiting time it takes for a donor that would match his unique profile.

Where to from here...It is unknown how long Owen has and is now under palliative care. Our only concern is to make him as happy as humanly possible in the time he has left.

Caring for an unwell child places huge financial strain on the family. Hospital parking comes at a huge price, as does petrol, food for hospital appointments and stays etc.

If you, like me, feel powerless to be able to help Owen physically, but desperately want to help support him and his family, then please help me in making the time he has as enjoyable as possible.

In helping with Owen’s care, you are making it possible for him to be able to spend as much time with his three Brothers, Mum and Dad and all his loving family to create fun and happy memories without the stress of financial pressure to find extra money for time away and visits to Owen’s favourite places and to be able to give him everything he wants.

This is my way of being able help my little Trouble, by allowing everyone that cares about him and his amazing family to help in the most meaningful way – fun and happy times with those that love him the most.