Eliza's story: 'Count your many blessings'
A mom writes about her daughter's time at Cook Children's
Jana Dodd writes a blog for us about her daughter's time at Cook Children's and her struggle with Hemolytic Uremic Syndrome.
"Count your blessings. Name them one by one.
Count your many blessings. See what God has done!"
- Johnson Oatman Jr.
I grew up knowing every word to the song, “Count Your Many Blessings,” but never truly appreciated the powerful message until this past summer.
Our daughter, Eliza, got sick June 19, 2015. It seemed like a typical stomach bug. But by the next day, we knew something was wrong. She was hospitalized at Lakeside Covenant in Lubbock, Texas a couple days later.
It was there that we received her diagnosis, Hemolytic Uremic Syndrome, or HUS, caused by E coli. They arranged for us to be immediately flown to Cook Children’s Medical Center in Fort Worth.
Three letters: H.U.S – that would change our lives forever.
Eliza’s kidneys began shutting down; she was exhibiting signs of neurological disturbances as well. We couldn’t believe our healthy child was going downhill so quickly. She was transferred to the PICU (Pediatric Intensive Care Unit), where we would spend the next 26 days.
The staff in the PICU started Eliza on dialysis right away. As a mother, it was my worst nightmare, to see my child unresponsive, lying on a bed with multiple machines keeping her alive.
Eliza wasn’t following the normal progression of HUS. She began having seizures, her kidneys still refused to work, she continued to have gastrointestinal bleeding, and was showing signs of extreme pain.
By this point, she had gone through several blood transfusions, plasma exchanges, dialysis around the clock, numerous MRIs, CAT scans, EEGs, and EKGs. She had a whole team of doctors and they were all stumped. We were constantly told that she wasn’t their typical HUS patient.
Thankfully, Eliza’s nephrologist, Dr. Jennifer Willis, kept researching and questioning Eliza’s unusual symptoms. This would eventually save Eliza’s life. She suspected Eliza not only had HUS, caused by E coli, but also atypical HUS, a genetic disease.
She approached my husband and I about running a genetic test on Eliza to confirm the atypical HUS diagnosis, but the results would take up to 8 weeks. In the meantime, she wanted to try a medication called Soliris. She warned us that it was very expensive and she was not sure if insurance would cover it.
We continued to pray, we asked for prayers, and decided it was worth the risk. We just wanted our Eliza back! This was the first moment I truly realized we might lose our precious baby. We had been so hopeful and optimistic the entire time, but my hope was gone. I pleaded with God to be with Eliza and her medical team and save her life.
He answered my prayers and the prayers of many who were praying all over the world for her. Dr. Willis was right, after two doses of the medication, we began to see dramatic improvement. Eliza woke up, began talking, and progressed more and more every day.
Fifty days after exhibiting her initial symptoms, we were released from Cook Children’s. During Eliza’s summer at Cook Children’s we became friends with all the employees. We knew the PICU nurses, the receptionists and Eliza’s specialists.
Cook Children’s became our home. Eliza now looks, sounds, moves, and plays like a normal 2 year old. The syndrome, atypical HUS, has long-term side effects on some of her organs.
Currently, Eliza’s kidneys function at 60 percent. She is on multiple medications for both seizures and high blood pressure. The atypical HUS diagnosis was correct, as genetic tests eventually confirmed. Eliza receives a Soliris infusion every other week. Our sweet girl is a model patient. She jumps on the scale, stands to get measured, picks an arm for the blood pressure cuff, and watches while her port is accessed.
We owe so much to all the wonderful doctors, nurses and staff at Cook Children’s, as well as family, community, and the countless people praying for Eliza.
Is it a normal life? No, but it is her life and we thank God every day.
“Count your blessings, name them one by one. Count your many blessings, see what God has done.”