After two emergency room visits, for my child with hemolytic disease of the fetus and newborn (HDFN), we had follow-up appointments with two different hematologists to find the best fit for our family. We chose Dr. Trinh Nguyen at Texas Children’s Hospital.
Our initial treatment plan
Dr. Nguyen’s enthusiasm and her detailed plan to help my child, Benelli, made all the difference. Dr. Nguyen suggested weekly visits to check Benelli’s hematology so she could decide if she needed a blood transfusion based on lab results.
The hospital has a transfusion center on-site, making it easier on the days Benelli needed transfusions. About two weeks after her first transfusion, she needed another. Dr. Nguyen noticed her hemoglobin levels dropping and quickly gave her a second transfusion. During this visit, Dr. Nguyen recommended a medication called darbepoetin alfa, which some studies say may reduce the need for more transfusions.
Learn more about HDFN treatment and care
Persistence in the face of denial
Sadly, our insurance initially denied the medication. It was hard to understand why they wouldn’t approve a medicine that could help our baby. Dr. Nguyen tried appealing over several weeks, but the request was denied again. Thankfully, Dr. Nguyen talked to the hospital leaders, and they agreed to give Benelli the darbepoetin alfa without charging it to our account—a kind gesture that turned out to be a blessing.
The day we found out Benelli would get the medicine without cost, she needed another transfusion. But after receiving darbepoetin alfa, she never needed another transfusion again. Dr. Nguyen kept filing appeals, and eventually, insurance covered the cost of the drug. But waiting for their approval could have meant more transfusions for Benelli.
The risks of waiting for treatment
The process that a medical professional must go through to appeal to insurance is extremely lengthy and time-consuming. Many times, receiving the medication may be time-restricted to save the patient’s life.
Had insurance approved the medication the first time, our daughter would not have needed another blood transfusion. This would have saved her the pain of extensive blood testing, IV placement and a three-hour blood transfusion, not to mention the expenses of the transfusion, plus the time off of work, 400-mile round trip cost in fuel and wear and tear on the vehicle.
All of this could have been avoided had the insurance not denied the medication in the first place.
The importance of choosing the right doctor
This journey showed us how crucial it is to have a caring and dedicated healthcare professional like Dr. Nguyen. Navigating the healthcare system, especially for rare conditions and new treatments, can be challenging.
Looking back, the frustrations of denials and appeals were outweighed by the relief we felt as Benelli thrived post-darbepoetin alfa. This experience taught us about making informed decisions, seeking proactive medical care, and the importance of healthcare providers who truly care about their patients.
In conclusion, going through HDFN and its treatment taught us the value of making informed decisions, seeking a proactive medical care team, and having healthcare providers who go the extra mile. Dr. Nguyen’s dedication made a huge difference in navigating a rare medical condition and finding innovative treatments that changed our lives.
