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.”

At the end of the day all volunteers were offered a chance to take our own ECGs. I got a knot in my stomach but I didn’t want to be a hypocrite, having told everybody how important screening is and then not doing it myself. I took my ECG and showed it to the cardiologist from Cook Children’s in order for him to tell me I was allowed to go home for the day. After this nothing went like it was supposed to.

I saw it in his face right away. It was like a sledgehammer to the head. This was not how I planned my day. I only took the ECG so I would know that nothing was wrong. There were no other options.

The cardiologist asked me to sit while he explained everything very carefully. I was diagnosed with a very rare but potentially deadly heart condition called Wolf-Parkinson-White Syndrome (WPW).

The only feeling was disbelief; I never thought it would have been me. It took me several days to fully grasp the fact that I had been diagnosed with something that had gone unnoticed my whole life. I had incredible support from the people closest to me and could not have gone through this without them, but I opted out of telling my peers about what had happened. I felt that if everybody knew, it might make it real. I could not allow myself to believe the truth at that point.

I had a heart ablation this summer and I was declared healthy a few months later. Now I notice the difference every day. I’ve had strange palpitations as long as I remember but I never thought anything was wrong. That’s how my heart had felt my whole life; I thought it was normal. It was not until they were gone that I could feel how a heart is supposed to feel.

I go back to that day at Cook Children’s a lot and wonder how my life might have been different. I might still not know. I would have been happy not knowing. I might never have known; but what if I would have found out after it was already too late? There is a chance that I would never have had any problems, but there is a chance that waking up that morning saved my life. I’m happy that I don’t have to guess between the two because now I know which option I chose: I chose to do something about it.

For more information

Mia Eriksson wrote this blog for us in 2013. We thought Heart month would be a good time to revisit her important story. Cook Children's Fort Worth and Arlington locations are offering FREE sports EKGs during the month of February. with a referral Heart conditions in children and young adults go undetected too often. Early detection could save your child's life! Learn more about Cook Children's Heart Center by clicking here.

1. Have you ever fainted, passed out, or had a seizure suddenly and without warning, especially during exercise?
2.  Have you ever had exercise-induced chest pain or shortness of breath?
3. Are you related to anyone with sudden, unexplained, and unexpected death before the age of 50?
4. Are you related to anyone who has been diagnosed with a sudden death-predisposing heart condition like Hypertrophic Cardiomyopathy and Long QT syndrome?

Early detection could save your child’s life. Cook Children’s will offer free EKGs during the month of February. An EKG is non-invasive and takes less than five minutes. The EKG shows how fast the heart is beating, the heart’s rhythm and the timing of the heart’s electrical signals. Any child can get one with a referral from a primary care doctor. Just ask your child’s pediatrician to order a “sports EKG.” Results are sent back to your pediatrician.

For more information, please call the Heart Center office at Cook Children’s at 682-885-2140.