Our Rockstar Kid Needs Your Support!
Our amazing big kid means the world to us, and she’s preparing for a big step in her journey. On January 6th, 2026, she’s scheduled for a Le Fort III Osteotomy—a complex, 12-hour procedure that will involve a 5-day hospital stay, followed by a 12-week healing process and an additional outpatient surgery to remove the external hardware. With a surgery of this scale, a blood transfusion is likely, and we would love to give back by encouraging others to donate blood in her honor.

A Little Background on Ab:
At 30 weeks gestation, her ultrasound revealed abnormalities in her head and body measurements. We were referred to a high-risk OB who gave us three possibilities: Thanatophoric dysplasia—a condition likely incompatible with life, Crouzon Syndrome (which mom also has) — meaning many surgeries and a long NICU stay, Or that everything could be completely fine and what we saw were just shadows.

From that moment on, we had weekly tests leading up to our scheduled C-section on June 29th. Though our delivery was delayed due to an emergency with another patient, it gave our doctor time to prep and gather a fresh team. (Fun side note: Our doctor used her break to go see Magic Mike—and yes, that was part of our delivery room conversation!) At 8:15 p.m., our miracle baby made her debut. She had the classic clover-shaped head associated with Crouzon Syndrome, but she was breathing on her own, and her vitals were perfect. Instead of heading to the NICU, she went straight to the nursery—and our family literally ran through the hospital just to get a glimpse!

The following months were filled with specialists, decisions, and overwhelming emotions—but we were never alone, thanks to our incredible support system of family and friends. We eventually found our dream team at Lurie Children’s – Dr. McKinnon (plastics) & Dr. DiPatri (neuro) -these two have been nothing short of magic.

At just two months old, Ab underwent her first cranial surgery, followed by a blood transfusion and a week-long stay due to infection. By November 2011, she was back in the OR for a VP shunt placement.

After relocating to Utah, we connected with another incredible care team. Her early years were filled with therapy (OT, PT, Speech), scans, waiting rooms, and hospital visits—our normal.

We made it to June 2023 before her next major surgery: a cranioplasty performed by Dr. DiPatri and our new plastics expert, Dr. Gosain. They were phenomenal, and Ab, as always, was a rockstar. An October infection led to another brief hospital stay, but she handled it like a champ.

And Now…
We’re gearing up for this next big milestone: her Le Fort III Osteotomy in January. With another likely transfusion, we’re asking our village—you—to help us support her by donating blood if you’re able.

Your donation might not go directly to her, but it helps ensure that kids like her always have what they need when they need it most.

Thank you for loving her as fiercely as we do. ???

The Dietsch Family
Jamie, Whitney, Abi, Zoey