By Jeremy Sobotka with Ragina Auch
Ragina and I are the parents of two adorable children – Jade, age 14 and Tristan, 9. We were introduced to the world of bleeding disorders when our son was diagnosed with severe hemophilia B. We’ve learned a lot in the past few years and would like to share the experiences of our first year.
After Tristan was born, his heel was pricked for routine newborn lab work. Throughout the day, the tiny puncture bled through the bandage and booties and onto the blanket. His nurse did a complete bandage, bed and clothing change. The next day, another nurse came in and changed the bandage, put clean clothes on, and brought in fresh blankets. On the third day another nurse arrived to change everything again, and this time I asked, “Why is he still bleeding?” I mentioned that the other nurses had changed everything each day prior because of the bleeding. Apparently, the nurses had not communicated that with each other and the doctor was unaware. When the doctor was notified, a blood draw was ordered to test his platelet count and check for other bleeding disorders. Later that afternoon he came in and gave us the shocking news that Tristan had hemophilia.
Our initial reaction to learning our son has severe hemophilia B was one of fear, grief, confusion and hopelessness. Though Ragina had heard of hemophilia, she didn’t know much about it. Never having heard of it myself, I didn’t even know how spell it! I hoped Tristan would just be given some kind of medicine, and everything would be fine. When I understood it was a lifelong medical condition, I instantly felt sick to my stomach, angry, scared and helpless.
It wasn’t until the 3rd or 4th visit to the hemophilia treatment center when the doctor suggested inserting a port so Tristan could be placed on a weekly prophylactic schedule that I began to realize the lifelong impact. There really isn’t anything that can or would prepare a parent for that kind of news. Everything sounded even worse when our pediatrician said he had never had a patient with hemophilia in his 30+ years of being a doctor.
As Tristan started learning how to get around, bruises began appearing all over. As the bruising increased with his activity level, we became more interested in having a port placed so he could start prophy treatments. However, we had to wait until after Tristan’s first birthday to proceed. He was already walking, and we knew things could get worse.
At first Ragina and I had split opinions on the decision to have a port inserted. After all, who wants to have their child go through any surgery, especially at a year old?
After weeks of debating, we decided it would be best for him to have a port. After going through all the difficult blood draws and injections, we have been happy with our decision. For us, it’s been a night and day difference - now that we can give him his treatments and have labs drawn without a single tear! Learning to infuse him via the port was nerve racking at first, but it became our weekly evening family ritual that we did together. Jade’s job was to keep Tristan entertained as I held him while Ragina did the infusion.
He didn’t experience many bleeds before the port was placed, so we have not learned how to access a vein. At nine-years-old, Tristan’s port is still fully functioning, but we are now exploring how best to learn to infuse our son through venous access.
Since those early days, we have accepted that Tristan will have hemophilia forever, or at least until a cure is found. We have realized the best thing we can do is learn as much as possible about his bleeding disorder so we can be better prepared to teach him as he grows up. We’ve been doing our best to treat Tristan as normally as possible. At the same time, overprotectiveness kicks in and sometimes I just want to put him in a bubble. On occasion, we have to get on our daughter because she tends to play rough with him, but he is usually the one instigating the horseplay! As he’s gotten older, he’s proven to be a typical boy who loves to climb and get into things… go figure!
With my son’s first year of life, I have learned that when it comes to bad news about my family, I tend to blow it way out of proportion. I am supposed to be the rock for them to lean on and I admit I am the least qualified for the job. I envy Ragina for being able to keep her cool and be strong enough to handle everything better than I do.
Presently, even though we are not together as a couple, we continue to work together for the benefit of Tristan’s health. We have worked well together in both routine and emergent care. Jade, even years later, still enjoys roughhousing with her younger brother!
Tristan is doing very well these days and enjoys video games, playing with his friends and family, driving an ATV, and has just signed up for 4-H. He hasn’t had many emergencies, a few stitches, but the biggest issue he continues to experience are bleeds in his ankles. We are in the process of having his dosage adjusted and getting orthopedic inserts for his shoes to hopefully help with that. You would never know by looking at him that he has hemophilia, he is just a normal 9-year-old boy living life to the fullest.
Hemophilia has been an experience for all of us. It has taught us a whole new level of patience. Tristan didn’t understand in that first year that anything was wrong with him. Even now, his hemophilia has been so well controlled that in his eyes, the problem he has is with the port and treatment rather than bleeding episodes. I don’t want him to know any different! Kids with hemophilia are the same as any child and shouldn’t be treated differently – they still play and fight with siblings. Just remember to be a bit more cautious and alert and know they will have a few extra bruises now and again no matter how careful they are. Take each day one at a time and have faith everything will work out fine!
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