My wife and I became pregnant with Ivanna shortly after the birth of our oldest daughter. Needless to say, that was a surprise. Three months into our pregnancy, we went to the doctor for a routine sonogram and follow-up. The OBGYN came in, deeply concerned, and told us Ivanna had hydrocephalus and that it was extremely severe. Hydrocephalus is otherwise known as water in the brain. My wife and I were horrified and scared. We went to several specialists and the opinions weren’t what we were expecting. One said most parents when presented with a case like this opt to terminate due to the prognosis being so bad and the other explained how terrible she was going to come out. Again, we were horrified, scared and lost.
We left our hometown to seek treatment elsewhere and found a children’s hospital that handles over 500 cases a year of children with similar brain issues. She was to be born full term and then had an operation to insert a shunt in her head to drain the excess water from her head. The surgery was a success.
With the grace of God, and family, we took it all one day at a time. We decided to treat her like any other child. God blessed us with milestones that exceeded all expectations. You see, Ivanna wasn’t supposed to walk, talk and have severe learning disabilities. Not only did she talk, she was bilingual and was about to learn a third language with the piano. Not only did she walk, she danced her heart out. She was getting ready to start school.
On August 29, 2019, Ivanna began vomiting, a sign that her shunt might not be working properly. We took her to her specialist’s medical clinic, where we waited for several hours to be seen by the doctor. The doctor instructed us to take Ivanna to the emergency room at the local children’s hospital. The doctor promised he would follow up with us at the hospital.
When we arrived, the hospital staff discovered that Ivanna was the patient of Ivanna’s specialist. The staff abruptly removed us from the emergency room and placed us in a room. All night we sat with Ivanna in her room waiting for the doctor to arrive. The doctor never went to the hospital that night, and all night, Ivanna received no treatment from the hospital’s on-call emergency room physicians.
This occurred because the hospital’s doctors were instructed not to treat the specialist’s patients as a uniquely dangerous and unlawful accommodation for the doctor.
Early in the morning, the nurses indicated that the doctor would arrive within the hour, which never occurred. Almost 12 hours after we arrived at the children’s hospital, our daughter went limp, turned blue, and began to foam at the mouth. Hospital staff sedated our daughter.
The doctors finally arrived and assured us that Ivanna would wake up soon and they would be ready to treat her. But our daughter never woke up. The doctor and other attending physicians provided us with no substantive information and misdiagnosed her condition as hypoxic shock and sudden death syndrome. Ivanna did not improve, her shunt malfunctioned and without the emergency care that she needed, she became brain dead and never woke up. She died on September 2, 2019.
At the time, we were in utter shock. Ivanna went from playing, laughing, running, and getting ready to start Pre-K, to dying unexpectedly. Parents should not ever have to bury their children, much less an innocent child of three-years-old. Ivanna became an organ donor and has saved the lives of other children immediately after her passing.
But this was no accident. This was also not a one-time medical malpractice event for this doctor. Our daughter died because of wide-spread policies and procedures at the children’s hospital that endangered the hospital’s patients, like Ivanna, and were implemented to accommodate and entice her doctor to do business with the hospital in exchange for millions of dollars in revenue and massive amounts of patients promised by the doctor. The hospital sought an exception for this doctor to practice Pediatric Intensive Care Medicine, even though he was untrained and unqualified in this practice area. Several of the medical directors refused to provide an exemption and warned the hospital that Ivanna’s doctor posed a danger to the hospital’s patients without necessary credentialing. The hospital threatened these doctors with termination when they refused to sign the waiver, bypassed these doctors when they refused, and obtained the exemption anyways.
This was no accident, and we miss Ivanna dearly. It’s a grief that’ll never heal. We are sharing this story for others because we don’t want any more children to die, and we certainly don’t want any more parents to live through what we have experienced. Children deserve world-class care from a children’s hospital. That is what we want. We want competent administrators and doctors who care about healthcare and not just making a profit.