Behind the Hemophilia B Diagnosis

BY TIFFANI P.

“Is his cheek swollen?” my mother asked when my son Aleks and I visited on a random Friday night. I told her his cheeks have always been chubby. She asked me to come into the next room and look. It was obviously swollen. I had no idea how I had missed it all day or how long it had been like that. I immediately got on the phone with our pediatric center to see what I should do. My son’s cheek was not warm or flush, just big. She told me to keep an eye on it and if it did not get any bigger, to hold out until Monday when the office opens. So, I did.

Come Monday morning, I called the office and they scheduled me in right away. The nurse practitioner was as confused as I was. She started noticing other small bruises on Aleks, such as on his ankle. This raised concerns, I could tell, but I knew nothing bad was happening to him. I stayed home with him all the time. She sent us to Toledo Hospital emergency room right away to get MRIs and X-rays. I was met in the hospital room by children services whose first line of introduction was, “I’m gonna be straight with you, your kid probably isn’t going home with you today.”

My worst nightmare was coming true right before my eyes. I could not comprehend what was happening. Luckily moments later, the doctor came into the room, ushered the children’s services representative out, and informed us that blood results had come back with some type of hemophilia. “Hema-what? What is that?” I was lost and it was all just the beginning. As we rolled our six-month-old up to the children’s floor of the hospital, I cannot tell you the relief that was lifted off my shoulders knowing there was an explanation for the bruises. I did not know where our life was going or what was going to happen to our baby boy in the next 24 hours, but he was still with us, in our care. I will never blame the nurse practitioner or the hospital for calling children’s services. I would want them to do that a million times again. I would never want a medical professional to second guess if a child is a victim of abuse. I am grateful they did what they did because my son was able to get the help he needed.

Days go by as we sit in the hospital with our son and with each passing minute, it seems as though we learn something new about his diagnosis, severe hemophilia B. Although, I probably couldn’t even say it once from the top of my head at that time. All the unfamiliar terms and lingo were so confusing. It was A LOT to take in, to say the least. Did I mention I was already four months pregnant with our youngest son during all of this? So, we had genetics done right away (or as soon as insurance approved it) on myself to see if I was a carrier. It turns out I am a carrier, but we will save that for another time.

When we were finally discharged from the hospital, we were still scared as to where this life was going to take us now, but we felt relief knowing our child was well cared for at the Toledo Hospital. I got home and realized I did not even know the terminology. I could not differentiate between really anything! Luckily, a sweet soul named Tara reached out to me not long after we got home from the hospital. Her son was just diagnosed about a year earlier and she really helped guide me through my early days of hemophilia. She was truly an angel in disguise, as any hemo mama is! I knew I could call or text her whenever I had any questions or if I just needed to vent. Tara helped me sign up with The Coalition for Hemophilia B and I applied for events right away because she said they were great at helping her in the beginning of her journey.

Months go by and we are doing our regular visits with the hemophilia treatment center, but Aleks gets a little chunky and his veins are starting to get harder to find. I was near the end of my pregnancy when we had to poke him seven times. SEVEN. TIMES. He was just under one year old and had blood spots on his onesie now and we had turned him and cradled him every way we could, but he NEEDS his factor. After what seemed to be hours, we finally were able to infuse his factor. It felt great knowing we finally got it, but I broke down and cried. I called my husband and said, “I can’t do this every week,” knowing Aleks was the one that had to go through the torture, not me. So, after careful consideration, we decided to get Aleks a port.

Aleks had his port placed on August 5, 2019, just a couple of weeks after his first birthday. The whole procedure went well and Aleks was taking his infusions wonderfully now. Another huge weight was lifted. We were learning the process of accessing Aleks’ port through our clinic and I ran into another roadblock: accessing his port myself. I had never been a fan of needles, or you know, poking my own child with needles. It was something I struggled with for weeks. I could do everything else except do the poking. Maybe that’s a normal feeling for a parent, but it was just so hard for me, and I could not even envision it. I did not know when I would get over that hurdle.

The Coalition for Hemophilia B held a women’s retreat that September in Phoenix, Arizona. I felt so blessed and was so excited to be able to meet not only Tara, but other women from the community. I learned about their fears, their struggles, and what has helped them cope. I made lifelong friends and I have a whole community of women that can help me whenever I may need it. So many of these women has endured struggles worse than mine and their tears and laughter gave me strength. I knew if they were still standing tall, right in front of me, and telling me their stories, I could do anything. I was capable of leaping over any hurdle that was in front of me, because these women did it too. I have never felt more empowered in my entire life. I was not afraid of hemophilia anymore. I was not afraid of what my son’s life was going to look like, because he has me, and I have these women.

I accessed Aleks’ port for the next infusion after I got home from Phoenix. I knew as we drove to the clinic for his infusion the week after I got home from the women’s retreat, I was going to access his port. Nothing was going to stop me. The women I had the honor of meeting in Phoenix helped change my life, and Aleks’. I knew if ANYONE was going to access my baby, it was going to be me, and I did. By February of 2020 we were doing home infusions all by ourselves and the freedom of not having to go to a clinic every week is amazing. Knowing if something were to happen to Aleks and he needed factor right away and I could do it, made me feel higher than the clouds themselves.

When hemophilia came into our lives like a wrecking ball, I did not know what the future was going to look like, and I am sure that happens with a lot of unsuspecting families. I am forever grateful for Tara, The Coalition for Hemophilia B, and our Hemophilia Treatment Center in the Toledo Hospital, for always helping us and guiding us through our journey. It is only the beginning as Aleks is now three, but having the community that we do, and the support system we now have, I know we will be just fine. Thank you all so much