Hemophilia: Tommy and Austine’s story
About this episode
Tommy and Austine Berry discuss their experience raising their son, Grayson, who was diagnosed with hemophilia after a subdural hematoma after delivery. They share their experiences about their son’s diagnosis and their support for one another. Tommy and Austine both agree they have strived to promote normalcy and experience joy throughout Grayson’s childhood.
- No family history
- Birth experience
- Birth complications
- Promoting normalcy
- Parent relationship
Austine: So I guess the first thing we are going to talk about today is: can you describe the moment when you saw our son our son Grayson for the first time?
Tommy: I can. It’s actually very vivid to me. Because leading up to that moment we had had kind of a difficult eight hours. The labor and delivery didn’t go perfectly and so we had moved to an emergency C-section. I remember hearing him cry was the first thing. And it’s funny because leading up to him being born all of my friends had told me that that moment is incredible. The flood of emotions, you’ll never feel anything like that. I’d told them: “Yeah, okay, whatever. It will just be another moment. I’m sure I’ll be happy.” But that flood of emotion when they lifted him up over the curtain so I could see the little baby was something that you can’t describe in words and I would never be able to I; I can’t imagine feeling that way again.
Austine: We were told that he was being transported to Children’s Hospital. Do you want to share your experience with all that?
Tommy: So during the birth, we had tried a method of extraction which includes, you know, like a suction cup to try to pull him out. It had caused a small what they call a raspberry, but it’s generally like just like a little bump on the top of the head. It’s normal apparently. We weren’t terribly concerned about it because the nursing staff didn’t seem to be terribly concerned about it so you know. When they told us they were moving him up to nursery level two because of that, we thought: Well okay, they’re just watching it. They’ll keep an eye on it. And then when they came back in and told us that he was being transferred because he was bleeding in the head and they weren’t sure why and they needed to have a specialty care area; I remember not being concerned about the move to nursery level two, but then the next thing that’s vivid to me is actually sitting in kind of [an] intensive care nursery waiting for people from Children’s Hospital to come to take him. The doctor who had done the delivery was there. I was in shock. I didn’t know what was really going on. She [mom] was pretty emotional and I remember her telling me specifically that she didn’t know that this was going to be an issue and that she wasn’t expecting this to cause any problems.
Austine: It was really scary to see Grayson hooked up to all of these cords and stuff to put into one of those infant transportation units that have the little holes in the side that I think they would use if they had to do some sort of stuff with an infant when they couldn’t really touch him.
Tommy: I remember you being so strong during it. I was broken up. I was falling apart, and I looked over at you and you were just so together while I was just falling apart. It was amazing how well you held together during that because I was not doing as well. I remember the nurse who was in charge of the team that was preparing him. It felt like she was getting me prepared for something terrible to happen to him. She was telling me: “This is a pretty serious situation.”
Austine: And wasn’t that the point at which she said that they were thinking it was going to be a 50/50 chance that he might not even come out of it?
Tommy: I don’t remember her putting a number to it, but she definitely said that we needed to be prepared. It was not a routine medical transfer at that point.
Austine: Oh yeah, they had to continue to run tests because they couldn’t figure out what was going on. I remember him getting multiple blood transfusions I believe because he was still bleeding. I remember Skye [physician’s assistant] coming into the room. It was maybe the afternoon of one of these days and I was just in whatever I could fit into after delivery [Laughs]. She sat down on the couch next to me and she said: “Hey, we just wanted to let you know that we have a diagnosis.”
And at that point, that was when she said we found out that he has hemophilia. Part of it may have been that I had no predisposed notion of what hemophilia really was.
From there I just sat back and said okay, how do we manage this? Because I knew it was just going to be the new normal in our family. And she made it sound like it was very manageable, which we’ve found at this point that it is. At first, I was a little bit self-conscious of you know having “the kid in the helmet,” quote end quote, but everyone who saw it thought it was so cool. And it actually ended up being a great tool because he got it when he was about six or seven months old, and this was when he was really starting to get up to learn how to crawl, starting to get into cruising, and it probably prevented a good number of head bumps. And so with hemophilia, head bleeds are a very serious concern. We were new to it. We didn’t really know what his limitations were. We have since found out that he is an extremely tough and resilient child and it takes a lot for him to have a bleed, which is likely also in part due to the prophy that he’s on.
Tommy: We still have it [the helmet]..
Austine: We do still have it.
Tommy: We will keep it forever.
Austine: Yep [laughter]. Do you think we have had any positive experiences living with the hemophilia or..
Tommy: We’ve had the same positive experiences that anybody raises a kid has, you know, and there are so many positive experiences about having a child. It’s hard to differentiate which ones are changed based on his hemophilia. On a day-to-day basis, I don’t really think about it. It takes him falling and like bumping for me to remember, oh yeah, our kid has hemophilia, I’ve got to watch out for that. He’s just so normal otherwise. You know we don’t try to coddle him. I play rough with him and everything. Maybe it’s something that’s always in the back of my mind, but it’s not always in the front of my mind, which is good I think because I want him to have a normal childhood. I want it to be a normal thing for him.
Austine: Well I think one of the amazing things that I’ve noticed since this is really my first experience with a chronic disorder: my mom had breast cancer but that was at a time before social media so I wasn’t reaching out to people who had similar experiences. But since then, especially now with Facebook and Twitter and all of these other wonderful platforms: you can connect with people all over the world who are sharing the same experiences with you. And It makes you feel so much less alone to know that other parents with older kids who have hemophilia had to deal with the same stuff at one point. And the tremendous amount of love and support that these people have for complete and total strangers has just been totally amazing! And I am part of a moms group on Facebook specifically for people with hemophilia, and everything is just so supportive.
Tommy: I am just so proud of you, like in everything you do; and how you’ve tackled Grayson’s medical issues, school, raising him in general regardless of the medical stuff. Everything you do, you constantly amaze me.
Austine: It’s been fun raising Grayson with you [Laughs]. Yeah, I can’t imagine having a different partner to have a kid with. It’s been a lot of fun. It’s had its struggles, but I think it’s made our relationship even stronger. I’m so glad that we have this family. I think team Berry is definitely a force to be reckoned with.
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.