Save my wife and for our newborn son

Hi, my name is Justin. This is a plea from a desperate new father trying to save his family.

My wife, Shi, and I were joyous when we found out we were expecting our first son. Her pregnancy went smoothly.

However, she had a long induced labour, and after trying for an unsuccessful natural birth, an emergency c-section was done.

Our son Jamie was born on July 2nd 2023, and he was well, but Shi suffered massive blood loss. Her blood was not clotting. She was transferred from Waverley Private Hospital to Monash Medical Centre, where she was pumped full of blood, antibiotics and other liquids to try and save her.

We also found out that Shi has a severe allergy to Penicillin, and she went into anaphylaxis. They managed to save her. I was not there for these events, as Jamie and I were still in Waverly Private. Jamie spent his first night away from his mother.

When Jamie and I were moved to the same hospital, we found out that Shi's blood still had issues, and that her kidneys are failing. She had swelled up from all the liquid in her body. The doctors were giving her medication to "kick-start" her kidneys. Despite having only given birth days ago, my wife has been enduring blood tests and IV drips and pills, when she should be at home resting and enjoying her new son.

As the days went by, Shi's kidneys kept worsening, and her blood was not recovering. But throughout it all, she remained strong. She still kept trying to breastfeed even though she was exhausted, even though doing so hurt her breasts, just so our baby boy could have some colostrum.

A few agonising days later, we were told that her kidneys and blood are still not working. Shi, a young new mother, has now started dialysis. The doctors do not know the exact cause, but they suspect that it could be Hemolytic uremic syndrome (HUS). They are going to start treating it as HUS, but the medicine used to treat it (Eculizumab) is listed as the world's most expensive medicine in the world. The cost for the drug is listed as $500,000 AUD per patient per year on the Australian Pharmaceutical Benefits Scheme, with incredibly tight restrictions on access. It is a drug that needs to be administered weekly, on an ongoing basis. Monash Medical Centre only approved the use of the drug for 1 week.

I am an Australian citizen and a member of the APS. My wife Shi is from Belgium, she does not hold Australian citizenship, and her current visa does not grant her Australian healthcare benefits. We only got married on June 18th 2023. We do not have our marriage certificate to apply for a spousal visa which would grant her Medicare, and it is already a lengthy process as such.

My wife did previously have Medicare, as it was linked to her Belgium Healthcare. But she had changed her address to Melbourne as she was moving here, and lost her privileges to Belgium healthcare, and subsequently her Medicare benefits even though she is still a Belgium citizen and is in Australia.

Shi has got private health insurance with BUPA, but they rejected to fund the medication when the hospital wrote to them. My understanding is that the hospital is writing to the pharmaceutical company to release the drug on compassionate grounds, but we do not hold much hope there.

Since the single dose of Eculizumab drug was given to Shi, there has been improvement. At this stage, we are not certain it is due to the drug, but the timings suggest it plays a strong factor. If it is due to the drug, she will require more of this incredibly expensive and restricted drug to get better and enjoy her time as a new mother and care and love our newborn son.

I am learning to care for Jamie while maintaining our small apartment, while also giving my wife the support she needs, but it has been so tough, both mentally, physically and most of all emotionally. Jamie, only a few days old, has been going with me to the hospital to visit his mother.

Please find it in your hearts to help this heartbroken family, to give my wife the drug that will help her, and to let Jamie have the childhood every kid deserves with his mother. We just want to bring our beloved wife and mommy home.