April 02, 2026
“Through sickness and in health”
We made those vows to each other 7 short years ago. I never dreamed that the health challenges we would endure together would involve our beautiful children.
After infertility struggles, we were finally blessed with our Abi girl. We’ve shared her story before. She was born in Kansas City with a hole in her diaphragm and faced an intense repair surgery at just 2 days old. We were unsure what her future would ever look like, but were reminded of the power of prayer and the strength of miracles. Today, she is beautiful, strong, independent, brave, and best of all, healthy.
We were scared to grow our family again, but put our faith in God to give us a another beautiful baby to raise and love. Charlie was born on January 7th, and we thought he was handsome, perfect, and, most importantly, healthy. Until an unexpected call from an unknown number told us the results of his newborn screen when he was just 3 days old.
Our sweet boy was diagnosed with a rare metabolic disease that prevents his body from breaking down amino acids founds in protein. Elevated levels quickly turn toxic to his brain which can put him in a metabolic crisis. We’re thankful for our fast acting medical team that were waiting for us to urgently arrive at St. Louis Children’s Hospital. They saved his life.
We quickly learned more medical terms than we ever desired to learn. We learned how to measure every drop of his special formula mixture down to the gram. We learned to place his feeding tube. We learned just how strong we can be together on the bare minimum amount of sleep.
We were adjusting to our new normal. That is, until concerning eye movements landed him in the ER where he had emergency brain surgery to remove excessive fluid build up. We learned that he was born with a tumor that blocks the fluid from draining appropriately. They saved his life. Again.
Unrelated. Flukes. Abi’s diaphramatic hernia. Charlie’s metabolic disease. Charlie’s brain tumor. All unrelated. All flukes. All rare. The combination of them all in one family? Unheard of.
Charlie’s metabolic diagnosis isn’t something he will outgrow. There is no cure or medicine. But there is treatment: a liver transplant. A new liver would provide him with just enough of the enzyme he needs to break down protein. So unless this new liver becomes stressed, his diet post-transplant will be close to normal and levels will maintain stable enough to protect his brain.
Transplants come with its own fears, though. Suppressed immune system. Life dependent medications. The fear of failure. All scary realities but with hope of an improved quality of life for him.
We have been working closely with his transplant team, genetics, and hepatology to get him big enough to increase the safety of transplant.
Fast forward to March 30th, Charlie was admitted at St. Louis Children’s after catching a respiratory virus. During that stay, lots of tests and scans resulted in further concern of his brain tumor. We now know enough to expect that it is fast-growing and cancerous, but a biopsy is required for a true diagnosis.
So on Monday the 13th, our sweet baby boy will undergo a craniotomy and attempted tumor recession.
Cancer? My sweet and perfect baby? We hold onto a sliver of hope that it isn’t true.
Our prayers now are for miracles. Miracles to keep him safe in the OR on Monday and that the surgeon can remove more of the tumor than expected. Miracles for the biopsy to show the tumor as benign. Miracles that he’s still able to have a transplant once he gets bigger because having an active tumor makes him ineligible for listing.
We would appreciate prayers for Charlie’s health. And prayers for us. Fear, anger, confusion, overwhelm. Grieving what it would be like to have normal baby struggles.
What would it be like to spend maternity leave outside of the NICU? To never have a team of doctors tell you just how close you are to the unimaginable outcome. To let your baby decide when they’re hungry instead of setting timers 24/7 and forcing feeds through a tube. To never see your baby with wires, breathing tubes, monitors, and getting poked for frequent tests. To never have to ask permission and for nurse help to hold your baby. The list goes on. We can only imagine what it would be like, and we’re so darn jealous of those who experience “normal”.
But also, we remain beyond thankful for modern times and modern medicine. One of our amazing doctors said it best, “in another place, or in a previous decade, your two babies wouldn’t have survived. Thank goodness for modern medicine.” Amen.
Thank you all for loving us through sickness and in health. Someday we’ll get to ask God “why”, but until then, we will keep on keeping on. We will fight. We will stay strong. For Charlie, but also for Abi. The world’s greatest big sister. But our outlook on life will never be the same again.
Specific Prayer Requests
- Guidance for Charlie’s medical team
- The tumor is able to be removed
- Charlie’s metabolic levels to stay steady and safe during the fasting required for surgery
- The tumor is benign
- Strength and clear discernment for our family
- Big Sister, Abi
