Hi Rad Kidney Kid Fam,
Some of you have been with us since the beginning, but our little dude’s following has grown so much over the last year.
So, for those of you new, this is us.
Very late in Austyn’s pregnancy, it was discovered that Conrad had a condition called LUTO. LUTO is rare, occurring in an estimated 2.2 of every 10,000 births.
There are several types of lower urinary tract obstructions. Conrad’s LUTO was from Posterior urethral valves, where a thin piece of tissue blocks the urethra. That’s it: one small piece of tissue caused stage 5 kidney failure in utero for our boy.
Austyn was hospitalized for the last two months of the pregnancy. Conrad started dialysis on day 7 of life. He is among the first few children placed on CARPEDIEM at Texas Children’s Hospital. A hemodialysis machine that was created specifically for infants.
Conrad spent over six months in the NICU, where he underwent several surgeries and many setbacks, but he finally came home at six months old.
Our family spent almost two years in Texas receiving care from a dialysis center capable of caring for infants on dialysis. Being home has not been without its challenges and surgeries. The thing with dialysis is it’s a temporary lifeline, and there can be A LOT of complications.
Our main goal has been to get Conrad big enough for a kidney transplant. Amazingly, Conrad is officially listed for transplant with Stanford Children’s Hospital. They have some of the best outcomes in the world for pediatric kidney transplants. Words we dreamed of saying for such a long time.
Unfortunately, after donor workups, we learned that neither of us can donate to Conrad.
Now, we are searching for a living donor for our little guy. A living donor is Conrad’s best option.
In Conrad’s case, a living donor gives the surgeon plenty of time to do a nephrectomy at the same time as his kidney transplant. Our team is trying to preserve his urine production and, therefore, his bladder.
Fun fact: kidneys from living donors typically last much longer. Since Conrad could require more than one transplant in his lifetime, this is important.
We are also currently listed on the deceased donor list with a long waiting time. Our team has explained that this option, specifically for Conrad, will have more complications and surgeries, most likely HD and bladder reconstruction.
Most importantly, though, Conrad has been on HD a couple of times now, and they don’t want to lose access because he will need that again in the future. Without access to dialysis or a kidney, there are no other options, and it’s a stark reality we constantly juggle.
So, ultimately, we are trusting our fantastic team and believing that God is placing it in someone’s heart to donate a kidney to Conrad.
Our little dude is such a fighter, and we are amazed every moment by the miracles we’ve witnessed. Besides fighting for his life, Conrad is just your typical, wonderful 20-month-old boy. He loves Miss Rachel, being outside, climbing everything, and reading books.
He also loves the water, rolling around his bed, and anything messy, but unfortunately, we have to restrict a lot of these things on dialysis. We look forward to the days when he has a kidney and can play outside and take his first bath! It will be a whole new life for us all!
We’re so overwhelmed with gratitude and love for such a fantastic community of support.
This journey has broken and rebuilt us over and over again. We trust that God will continue to use and move others through Conrad’s testament. Thank you for joining us and continuing to pray for our little dude’s kidney bean!
If you want to learn more about becoming Conrad’s living kidney donor and our MIRACLE, please get in touch with our Kidney Transplant Program Manager- Gerri James, at 650-498-4905. For more information, check out the Rad Kidney Kid Page.
With Love, The Rad Kidney Kid Fam