Lowen’s Stories

People say your life can change in an instant. That day for us was September 12, 2019.

Our younger daughter, Lowen was 23 months old at the time. She had been sick for a few days, thinking it was your typical “kid who attends daycare” sickness. After three days of no signs of her getting better, we took her to the Emergency Room at Capital Region, where she was born. After evaluating her, they did not hesitate to send us straight to the PICU at Women’s and Children’s Hospital in Columbia. I will never forget when a group of 8 doctors, dressed in all yellow gowns, masks and gloves came in and gave us her diagnosis.

Lowen was diagnosed with Hemolytic uremic syndrome (HUS) 

It is a life threatening disease that affects the blood and blood vessels. It results in the destruction of blood platelets (cells involved in clotting), a low red blood cell count (anemia) and kidney failure due to damage to the very small blood vessels of the kidneys. HUS often occurs after a gastrointestinal infection with E. coli bacteria.

Once we digested her diagnosis, we got a game plan with her team for what needed to be done to get Lowen better.

It’s very uneasy feeling hearing the words, “Most children make a complete recovery, but some kids just don’t make it.” We needed to hear this, but we didn’t want to hear it, either.

Due to her kidneys shutting down, she had to have blood transfusions, daily dialysis, and she was on blood pressure medicine.

A side effect from HUS was seizures. Over the course of the next several days, Lowen had five seizures. She was now on seizure medicine, too. After her last seizure, she really wasn’t responsive. She wouldn’t look to the right, only looking to the left and never focusing on anything. At this point she needed a Pediatric Neurologist. So after 10 days in Columbia, we were transferred to St. Louis Children’s Hospital. 

Once we got settled in St. Louis, meeting a new team of doctors and nurses, Lowen became responsive after the seizures, but overall got worse with the disease the next few days. We were fortunate we were already in St. Louis and didn’t need to go in an emergency.

Lowen was now on dialysis 24/7, blood pressure medicine, seizure medicine still, and several peripheral lines.

She ended up being intubated for 11 days, having to be sedated during those days and even in a medically induced coma for a couple of those days.

This was quite a long road for us. We had good days and we had really bad days with several complications along the way, yet also experiencing some amazing miracles.

We missed our older daughter, Aven (age 5 at the time) so much. 

These were definitely our darkest days.

We ended up being at St. Louis Children’s for another 33 days, totaling 43 days of living in a hospital.

We came home October 23rd on only two blood pressure medicines and Lowen received outpatient PT and OT at Children’s Therapy Services in Columbia for several more weeks.

Today, Lowen is a happy and overall healthy 6 year old!

She takes a high blood pressure medication twice a day and her overall kidney function is around 70% putting her in stage 2 of chronic kidney disease.

We are so blessed with our miracle girl and all of the care we received along the way. Women’s and Children’s Hospital and St. Louis Children’s Hospital will always hold a special place in our heart.

After all, she helps advocate for SLCH being a Children’s Champion!