Gaining Assurance

Before getting diagnosed, Vohn was always in and out of the hospital. He had a lot of outpatient office visits, too, and always had extra bleeding. Every time he had dental work or even just a wiggly tooth, he would bleed. His doctors and dentists never suspected hemophilia, so Stan and I never thought anything was unusual.

One time we even took him to the emergency room because of an elbow bleed; the doctors there just diagnosed him as having a sprain or dislocation of the joint, and just put on a splint. What they didn’t realize was that it was another bleeding episode: Vohn’s elbow bled for more than three weeks. He was only 4.

Trips to the doctor and dental offices became routine. We blamed the injuries and bleeds on Vohn’s active lifestyle. That seemed the most logical explanation back then. Because of ignorance, we thought that Vohn just hurt himself because he played too hard and too much.

Then, when Vohn was 7 years old, he had oral surgery. The bleeding lasted almost 3 weeks. The oral surgeon did everything that he could to fix it...then he started asking questions. “Does this always happen to Vohn?” We told him, “Yes, since he was a baby. He is just sensitive and he bleeds easily. Really, nothing to worry about.”

His response was that the bleeding was not normal, but he told us not to worry. He mentioned possible irregularity with Vohn’s platelets. To make sure, he referred us to the pediatrician for blood work.

Then came the news. The pediatrician said Vohn had hemophilia, but he wasn’t sure if it was A or B. We were called in to see the hematologist and she confirmed the diagnosis: Vohn had Hemophilia A, severe. Stan challenged her and demanded a second opinion. I was in total shock. I couldn’t talk or even hear anything. Vohn was scared because he saw me crying. He didn’t understand what was happening. I couldn’t believe this was happening and I was thinking my son is normal, you know! He is normal! Nothing’s wrong with him!

This is the first case of hemophilia in our family so it was very new to us. I couldn’t even spell the word “hemophilia” at first, let alone understand it. We didn’t even know anyone with hemophilia. Shortly after we found out, Stan did some research on the Internet. Not knowing anything at first, everything that he read about hemophilia seemed frightening. It was a very scary time for us.

It was so hard to accept the fact that something was wrong with our firstborn. And I felt like I wanted to put Vohn in bubble wrap so that he wouldn’t get hurt again. Luckily, resources were made available to us through Vohn’s specialist in Oakland, but acceptance was still very difficult. Stan and I were in denial for months.

Then a social worker referred us to the Make-A-Wish Foundation. What they did for my son was amazing. We went to the Give Kids the World Resort in Orlando, where Vohn was treated like a king and we were treated like royalty. We began to see the brighter side of things then.

We also saw a lot of children who were suffering with other diseases, many of whom were undergoing chemotherapy. I saw children in wheelchairs, and children with breathing tubes because they couldn’t even breathe on their own. Meanwhile, Vohn was running around and very active. That’s when I started counting my blessings and went about getting the answers that I was looking for. As time went by, all of the negative things we had been feeling inside started to turn to something very positive.

I became very grateful that at least my son can still run and play. All he needs to do is infuse and he’s a hundred percent.

And we don’t have to worry about running out of factor. I used to worry about losing our health coverage because we are self-employed and on a COBRA plan, and we learned that other insurance might not cover Vohn because he has a preexisting condition. Since then, I learned that CSL Behring has a program called CSL Behring Assurance for consumers, where they award you certificates worth a complimentary, 1-month supply of product. You never have to worry about not having the medicine.

My husband and I don’t see the negative side of things now, we only see the positive side. What happened with Vohn changed our family. We thought we were going to have to go through this journey by ourselves, but what we have learned is that we’re not alone in this world. There are a lot of resources and a lot of people who care.