Masons HLHS Journey

Hi, my name is Leticia and I am Mason’s mother.

I’m hoping to give my little boy the best life possible whilst he’s in hospital and seeking assistance for medical treatment outside the hospital to save his little life.

I went and had my 19+5 week scan to check my baby’s gender as any new expecting parent does.

6:50am the following morning my life was about to become not so normal anymore. My GP explained there was a problem and Mason had an issue with his heart and I was advised to make contact with the hospital and follow up in a week as it was long weekend for Easter.

My mind crumbled why the rest of my body was numb. I remember holding my stomach whilst trying to hold back tears pleading Mason not to leave me.

Over the next weeks and months I was back and forth to hospital appointments for monitoring and it was just an emotional roller coaster day and night.

at 32weeks I was advised Mason’s lung collapsed and survival was nil and his surgeon had declined to operate and at that appointment advised there was no need to have an MRI as it was clear the lungs weren’t working.

I was met with palliative care and then took it apon myself to go and plan his send off. Nothing a parent EVER wants to do.

I had planned his funeral, casket planned the family on what we want and how we wanted to send our little boy off. I just could not look at nursery I had set up to bring him home too, I had donated all Mason’s belongings we had to charity and only packed his hospital bag with little clothing and supplies as we were advised he would only last 3hours Max.

All was becoming too much so I drove to QLD at 35+3 to escape the trauma here and reality that I was coming back to take on Masons end of life (as they described it). The afternoon before we were driving back to Sydney the phone rings and it’s the Heart Centre telling me they want to see me on Tuesday and the surgery for Mason was back ON!

I was in shock.

37+3 Mason was born. I watched them take him from me whilst trying to get his prostin into his tiny little veins at the time he was deteriorating. The Dr could not get the canular in. He was panicking. He managed to do it just in time.

They whisked him away into the NICU unit where he stayed for 1 night and then at 2days old he underwent his first Open Heart Surgery.

Mason has since had the Norwood, Bi-Directional Glenn & Tricuspid Valve Replacement thus far.

He hasn’t had the best start to life, things have been very rocky and bumpy along the way.

He’s crashed and come back, code blue’s, rapid calls

You name it.

Mason is now needing a Heart Transplant to save his life. Westmead unfortunately can’t do it and Melbourne have declined. Mason is end of stage heart failure and palliative care are again back on board.

We are now wanting to source other options and it’s going to become costly. I was working but have had to quit my job in order to become Masons full time carer. Being a NZ citizen and Mason being born in Australia I don’t qualify for any assistance other than FTB. This doesn’t even touch the sides of what bills I have to cover and having two other children getting them to and from school and cared for whilst I have been here at his bedside for the last 7months.

Mason is now 7 months old and it’s such a miracle we’ve had him this long, but I don’t want to give up and he’s still fighting everyday we have been here.

we have never left hospital other than coming to Ronald McDonald house to spend time for Christmas and the odd gate pass on a daily visit.

It’s become exhausting for the other two children especially being separated on numerous occasions as not everyone can afford to give up their daily lives to assist us with the children.

Im not normally out to ask for help as I like to do it on my own but this time I am asking. I want Mason to have whatever he needs and more. I’d love for his siblings to have what they need to get through this next emotional time and to do things with Mason if we can’t find a solution to get him the help he needs to survive.

Our family thank you for taking the time in reading our plea for help.

You can find Masons story on TikTok

Masonsheartjourney2022

Thank you