Ariah

Location of Treatment: Driscoll, Edinburg, TX & Texas Children’s, Houston, TX

Diagnosis (Secondary/Primary): Primary HLH

Short Story: 

Story told by her mom: 

Ariah was born premature at 34 weeks, due to amniotic rupture.  She spent 9 days in the NICU at Driscoll Children’s Hospital. As a first-time mom, leaving my baby behind for 9 days was one of the hardest things I’ve had to do. While in the NICU, Ariah was diagnosed with Jaundice.  She received light therapy for 2 days to help her bilirubin decrease. Once Ariah began to eat on her own and her lab work was in normal range, we were discharged from the NICU on January 19, 2025. 

            I can’t begin to describe how excited we were to bring our baby home. Ariah spent her first month at home happy, healthy, and most importantly loved. I began taking her to her pediatrician for follow up’s due to her prematurity. At her 2-month checkup, Ariah was due for her 2-month vaccines on March 10, 2025. Our pediatrician informed us that a side effect of the vaccines could be a low-grade fever for about 2 days. However, on March 12th, Ariah’s fever spiked to 102. My husband and I decided to take her to Driscoll that afternoon. After various lab work, they told us her blood work seemed normal and that we should continue to monitor her fevers and, we were sent home. The following day, my husband and I monitored Ariah day and night. Her fevers were between 99-100. On March 14, her fever in the morning spiked again to 102. She had also developed a rash all over her body.  At that moment, my heart knew something was wrong. Without hesitation, we took her back to Driscoll. 

On March 14th, we were admitted. Driscoll began to test for a variety of virus’s, infections, and diseases. My baby was poked constantly for lab work. A part of me knew something was going on, and it broke my heart seeing my baby in pain and knowing I had no way of taking it away.  That same day, March 14th, the Dr. decided to do a Lumbar Puncture to determine if Ariah had meningitis.  This was the first “diagnosis” or what Dr.’s thought it could be.  However, fevers and rash, are a common symptom of a variety of things. The results for the Lumbar Puncture came out negative.  Ariah did not have meningitis.  However, she did have Roseola.  A viral infection that is spread via kissing, coughing, or sneezing. Because her body had already began fighting the virus, at the time, the Dr. did not see a need to treat it.  They mentioned that Roseola tends to resolve on its own. However, the viral infection did not explain why her lab work was abnormal. 

            We spent the next few days in a grey area.  Not knowing what was really going on with Ariah’s blood work.  The pediatrician at Driscoll recommended we consult with a blood disorder doctor. On March 16th, we met with the Oncologist. Hearing that there were only 2 possibilities of what could be wrong was devastating. Leukemia or HLH. At first glance, the Oncologist believed Ariah had Leukemia. He requested labs and said results would be back in a few days. However, during the time we were waiting for results, Ariah’s lab work did a complete 360.  Her blood work was all in normal range again. We were so happy. We thought our baby was getting better all on her own. However, on March 18th, Ariah’s blood work declined. Although she didn’t look sick, her lab work indicated she was.  Her white blood cells, red blood cells, platelets and hemoglobin were low, her ferritin and triglycerides were abnormally high, and her fevers came back. The Dr. also noticed she was developing an enlarged spleen. The Oncologist made his way back to our room. The great news was Ariah did not have Leukemia. The scary part was her lab work indicated she had HLH. 

To be honest, before her diagnosis, we knew nothing about HLH.  We had never even heard of it. I immediately did what I was told not to do. Look on the internet. I immediately broke down knowing my daughter was diagnosed with a disease that happens in 1 out of every 50,000 births. The Oncologist recommended we do lab work to determine which type of HLH Ariah has. The first step was a Bone Marrow Aspiration that took place on March 20th. Our 2-month-old would have to be under anesthesia for this procedure. At the same time, the Dr. would perform an MRI. After her procedure, Ariah was placed in the PICU for monitoring. We spent three days in the PICU. During this time, Ariah had a PIC Line placed in her leg to help with the drawing of blood. However, the PIC line was unsuccessful the first 2 times, on the 3rd try, they were able to insert the line in her left leg. I knew my daughter was in pain. She was fussy, yet at the same time very tired. The only positive thing was she was still eating very well and regardless of how many times she was poked, she still smiled through it all. 

            After Ariah had her PIC line inserted and she no longer needed to be monitored, we were moved to the Oncology floor at Driscoll. Because of Ariah’s low platelets and hemoglobin, blood transfusions started to occur.  Our daughter received a total of 5 blood transfusions in just 2 weeks. While on the Oncology floor, it was just a waiting game.  Waiting for results, monitoring Ariah’s lab work and fevers. Results came on March 22nd. Confirmation that she had Primary HLH. We were told starting treatment as soon as possible, was in Ariah’s best interest so that we could suppress her condition This consisted of Chemotherapy (Etoposide) and high dosages of steroids. Ariah had her first session of Chemotherapy that same day, March 22nd. Due to Ariah continuing to need a variety of labs, the Dr decided the PIC line was not sufficient. Ariah would need a central line. Another procedure under anesthesia. This procedure took place on March 26th. Again, the placement of the central line was unsuccessful the first 3 tries. The central line was placed on the 4th try. 

After her central line procedure, we had to continue being monitored for any complications. For the next few days, Ariah was having blood drawn every 4 hours for lab work.  The Oncologist went over the results with my husband and I and explained that to Ariah would need a Bone Marrow Transplant. However, due to Driscoll not providing transplant services, we would have to be transferred to Houston to Texas Children’s Hospital. 

On March 29th, after going over the next few steps, we were discharged from Driscoll. Ariah is now at home and definitely more comfortable. She is receiving outpatient chemotherapy every other week in conjunction with her medications. On April 7th, we began the process of looking for a donor.  A few weeks ago, we received news that Ariah has 5 possible matches for a donor. We are expected to be transferred to Texas Children’s in just a few months for her bone marrow transplant.  

We are still trying to cope and learn about HLH. But we hope to continue to provide updates about Ariah’s treatment to raise awareness and bring hope to another family that you are not alone.