Support the Joubert Family on Gus's Heart Journey

Dear friends and family,

As many of you know, a month ago, my brother and his wife welcomed their son, Augustus, into the world. Gus was born with a life-threatening and irreparable heart defect that has changed our lives. Mark's last update articulates most clearly the complexities and deep sorrows of these circumstances:

"It's been hard to give public updates offering a broad review of the last four weeks. It's been a total rollercoaster. Since Gus was born on December 4th, he spent time in the NICU, underwent a major catheter procedure in which two stents were placed to keep him alive, and since early in week two, our home away from home has been the CICU (cardiac intensive care unit). We've seen ups and downs. He's done well and he's had bad days. He's been intubated and extubated multiple times. Tonight I write this as I sit by him - peacefully sleeping after a tiring day.

Along the way we've learned that Gus' hypoplastic right heart syndrome (HRHS) is atypical with additional pathologies that complicate his treatment plan. His doctors rarely refer to his HRHS these days, and rather, his PAIVS (pulmonary atresia with intact ventricular septum) has taken center stage. Essentially his coronaries are not sufficiently supplying his heart with blood, further complicating his single ventricle situation.

For twenty weeks, Amanda and I saw his diagnosis come into focus as HRHS. We learned all we could about the typical three to four stage treatment plan that is typically used to keep HRHS kids alive. It's been a huge adjustment for us to slowly realize that this route probably won't work for Gus. After dropping to critical blood pressures during the two catheter procedures he had, it has become clearer that the most viable long term solution is to skip the multi-year, multi-stage HRHS treatment and go right to a heart transplant. This last week, Amanda and I agreed to begin the detailed evaluation process that could soon see him listed for a heart transplant. We are confident he will be approved to pursue this as his best long term option.

However, the last two days have added to the burden of these changes as we've seen the function of his one working ventricle - his left ventricle - deteriorate at an alarming and unexpected rate. What does this mean for us and for Gus? In the short term, it's a waiting game. We have to see if medicine can be used to stabilize his heart (he has a very small window in terms of a safe blood pressure range). The big question, devastating to consider, is: can he make it to a transplant? Can he last that long, and if he can, what will be the cost and toll to keep him alive. It could mean months of waiting (an estimated minimum of 2-4 months). This means we've had to have other painful conversations about hospice options. The heaviness of it all, for those who understand it, is that heart transplants themselves are not a real cure or resolution to his condition. A heart transplant trades one terminal illness with another disease. It means Amanda and I have hard choices to prayerfully navigate in the coming days."

So many people have reached out with the desire to give financially, and the goal here is to provide a centralized platform for that. The immense medical costs accrued each day of Gus's life to preserve him, coupled with the necessity for both Mark and Amanda to take time off work to care for their son, are indescribable burdens to add to a circumstance that is already heavier than words can communicate.

The goal for these funds is to assist Mark and Amanda with the immense medical costs associated with giving Gus the daily care he needs. They will also be used for covering future expenses related to Gus's ongoing care, including either potential transplant or, in the worst instance, hospice costs. They're intended, further, to provide a relief from the burden of daily living expenses, while they both step away from work to care for their son.

Our hearts overflow with thanksgiving for the outpouring of love and support from each of you. The prayers, gifts, hugs, and words of encouragement have consistently offered tangible reminders of the grace of God to sustain His children in the midst of trials and suffering. If you haven't had the opportunity to contribute, or if you're able to give a little more, your support will further ease the financial burden Mark and Amanda are facing. The more we can raise, the more time we can give them to focus on being present with Gus each moment that we have him.

Please consider also sharing this fundraiser with your network. Your continued efforts will help us reach a wider audience and ensure that Baby Gus receives the love and care he deserves.

Lastly, we plead with you to pray. Pray that the Lord would uphold and sustain Mark and Amanda. Pray that God would give them wisdom and clarity in making decisions for Gus's life. Pray that they would be comforted. Pray that they would be strengthened. And we ask you to pray that the Lord would preserve Gus's life.

We are endlessly grateful for the love and compassion that has already been extended to this family. Your continued support is a testament to the strength of our community.

Thank you for being a part of this journey with Mark, Amanda, and Gus. Your kindness will forever be etched in their hearts.

With heartfelt thanks,

Melanie Joubert and the Joubert Family