Hemophilia: Jeanette, Brian and Jeremiah’s story
About this episode
Mother, father and son discuss their individual and collaborative experiences in living with mild hemophilia. Support from Children’s Minnesota and their community has helped them the most. Faith has played a central role throughout the diagnosis process.
- Diagnosed in infancy
- Hospital and clinic staff support
Jeanette: Jeremiah was about 20 months old, and he was taking a nap, and he had his nook, and he had started kind of crying, but it didn’t sound right, and so I went into his room, and at the time, we lived literally a couple miles from Brian’s work. There was blood on his pacifier. And I was like, what in the world? And I didn’t know if just a gum—I don’t know what I thought. I rinsed it off, and I thought well, he was really tired, and so I laid him back down. And then he was gurgling, like kind of gagging on the blood, and I took his nook out again, and it was covered. I called Brian right away.
Brian: They didn’t know what was wrong with him, obviously, and called an ambulance almost right away. So we rode in an ambulance from Eden Prairie down to Children’s Hospital, and they checked him into the emergency room, and did not know what was wrong with him either. They looked in his throat and checked everything. So it was a real mystery. I think the uncertainty of it all was the hardest thing, I think in those first few hours, because it wasn’t until really they had brought in some of the doctors to take a look at everything, and it wasn’t until they realized he had a laceration of some kind in his throat that was causing the bleeding. All things considered, we were very thankful that we found out when we did. He was such a young age—he wasn’t even two—and all we could think afterwards was, it was a situation where it was scary and uncertain and difficult to go through, because we didn’t know what was happening, but on the other side of it, realizing that if it wasn’t for this, we may never have known, or it may have taken years for us to know, and it may have been a worse crisis.
Jeanette: I think one thing that is interesting—I don’t know how this fits in with different or same than what I thought—just how much we have to think through things a little bit more. I told you before, when we take a vacation, my husband’s family is in Ohio. So if we go to Ohio, our first time going after his diagnosis, we had some conversations, and we had to look what hospital near where we are is the best hospital to take him to if something happened. And you guys even gave us some factor to bring with us when we traveled. And we went out East once, and we brought the factor with us.. And just finding where is the hospital that’s the best fit for hemophilia when we travel? I think that’s something I wouldn’t have thought of. And we were like, oh great, a whole other level of things to think about. Which was good to think through though, because you never know what’s going to happen, and we didn’t want to be somewhere they couldn’t treat him, and then we’d have to wait, and time is not your friend if there’s an injury. And I think the biggest thing that’s different about it, is I thought anytime he hit his head, that there would be a massive brain bleed, so I would kind of freak out as a Mom.
Brian: Yeah. One time, he hit his forehead on the corner of a wall. As soon as it happened, we just thought, ‘Oh my goodness, this is going to be bad.’ But it was just a bump on his head that we had to get the infusion for. So it went away. We started to think for a while, ‘this is going to be a regular thing that we’ll have to drive up to Children’s Hospital do this.’ But he was always well taken care of, and now, it has been a while since an incident I guess. Anyway, it was just something to think about for the future, like starting to realize as he gets older, what are the implications here? What can he do? What sports should we think about? Even now, it’s like, what careers should just be off limits maybe for him?
Jocelyn (pediatric nurse practitioner): Were there many bleeds? Kind of remind me.
Jeanette: I think initially, it seemed like there were. He would knock his head, and there’d be the knot, and we’d have to go up again. He fell over his bike once. We were like, oh no, and we had to go up.
Jocelyn: Would you get an infusion here at Children’s?
Jocelyn: Do you have any memory of that?
Jeremiah: The bike? Yes.
Jocelyn: How old were you?
Jeremiah: I don’t know. What was scary was, my brother came in with his bike, and I was coming in a different way, and I hit his rear wheel, and so I flipped over and landed right in front of Dad, like on the curb.
Jocelyn: What would you say it’s like to have hemophilia? Is it different than you thought?
Jeremiah: I never thought anything about it really. It’s sort of different, but I kind of just live a regular life. What is different is I can’t play football or hockey—I don’t really like hockey—or baseball or whatever.
Jocelyn: Do you think in your mind, ‘I have to think about this’?
Jeremiah: No. That’s what my parents do. [Laughter] If you could give advice to parents and other young men about what it’s like and what would be helpful, what would you say?
Jeanette: I think just writing down your questions that you have, and asking them. There is no question that truly is dumb. I learned that, because as we walked through the process of this diagnosis and forward, questions would come up, even when I was at home before an appointment, and we would come in and ask a ton of questions about things. But I think just finding a community to support you, just people who understand.
Brian: One thing I would just say, similar to what you were saying, is just if you have to get a Band-Aid because he scratched his finger, it’s not the end of the world; he’s not going to bleed to death because he scraped his knee on the sidewalk or something like that, so you don’t have to panic. Which was helpful just to be able to say that.
But at the same time, we need to know right away if he injures himself so we can take care of it. So that’s helpful just to be able to talk about it in those terms. And it was helpful to have you come to the schools at that young age when they were bouncing off the walls, and be able to tell the teachers, ‘Just keep in mind, this student has additional considerations, if he does have a major injury.’
Jocelyn: Now you are potentially, in the future, going to be listening to this tape at the Library of Congress. So if you could say something that you’d always wanted to say to one another, what would that be that you’d like to hear on this little CD?
Jeanette: Coming so close to thinking we might be losing you at one point was a devastating thought. And we’re not guaranteed, you know, all the years that we might like to have, and I’m just so thankful for the time the Lord has given us.
We wish to extend our thanks to the families who have shared their story here about the impact of living with hemophilia and sickle cell disease. We would also like to thank the many who worked on this project:
The Children’s Minnesota StoryCorps Legacy Team:
Eddie Gonzalez, Jocelyn Bessette Gorlin, Susan Kearney, Stephen Nelson, Margaret Heisel-Kurth, Stephanie Davis, Angela Blue, Elizabeth McDonough, Jill Swenson and Alisa Linne.
Special thanks to:
Stephanie Moua, Hamdi Hussein, Sadia Farah, Fatima Ali, Caillyn Costello, Suzanne Lehman, Suzan Ulrich, D'Ann Urbaniak Lesch, Justin Nelson, Allison Albright, Marvin Holmes-Leopold, Jose Rodriguez and Mitch Hare.
Minneapolis Institute for Production and Recording:
Jose Rodriguez and Mitch Hare.