Transcription of Scott Wentzell for the show Love Maine Review 2014 #172
Lisa: Each of us has access to a different set of attributes, skills, talents, and physical characteristics. For some of us, the attributes are more readily apparent than for others. This is especially true of individuals who were, in the past, referred to as handicapped. We now understand these individuals to be differently abled and often capable of accessing attributes that many of us never even considered largely as a result of learning to work with the world.
I’m at our next guest at an art opening for Art Collector Maine through Thomas Moser which, I think, a lot of people will recognize as being one of Maine’s top furniture makers in the state, and actually, it’s national now. This individual, Scott Wentzell, is actually in Marketing with Thomas Moser, but perhaps, equally important is also on the board of directors with the Morrison Center, and probably more importantly, is father to Scotty Wentzell who has celebrated his 13th birthday?
Scott: That’s correct.
Lisa: Brings a really interesting sort of story into the world, so we thought we’d have Scott Wentzell come on and talk about Scotty Wentzell and his adventures with Scotty and with his wife, Lisa. Thanks for being with us today.
Scott: My pleasure.
Lisa: Scott, you didn’t really … you weren’t really thinking that your life was going to kind of turn out the way that it did when it came to having a child who has a syndrome, Dubowitz syndrome, which is very rare and not a lot known about it. Tell me a little bit about that, about the beginnings of this.
Scott: Sure. My wife and I actually went to high school together, didn’t date until after college, but we’re familiar to each other, so we go back long ways. When we got married in the ’90s, we’re living up at Sugarloaf and thought that was going to be great place to start and raise a family.
When Scotty came along, we were surprised to learn, at first, it was a cardiac issue. They [inaudible 00:05:34] with an issue called tetralogy of fallot which means, essentially, he had four things wrong with his heart.
He was born in Farmington. Immediately, we were transported down to Maine Med which has one of the most amazing cardiac units in the country, and specifically, pediatric cardiac professionals in the country are based there.
He had heart surgery at five days old and another full, bigger surgery at about six months old. We were immediately put on this sort of path of the unknown with Scotty and immediately felt like we were … We couldn’t be in a better place.
It did mean that we left Sugarloaf and moved down closer to the Portland area to be a little bit closer to the services that he needed then and that we came to realized he need long term, but there’s so much here in this community that we never knew about because we never had reason to access the different programs and organizations that are here.
I’d love talking about his story in the sort of world that opened up to us in having to understand how we could help them reach his full potential as our son and as going through childhood. He’s 13 now, so we just entered the teenage years, which is a little daunting for I think any parent, but we got great support system.
Lisa: Do you know that Scotty had issues before he was born?
Scott: We didn’t. My wife’s pregnancy was completely normal which is fairly typical for Dubowitz-involved children. The first sign that we had that anything was wrong was when she was about a week overdue and went to have a stress test administered, just what they would normally do for any woman who’s past her due date and they wanted to make sure everything was okay.
One of the things they realized when they do this test is they’re looking for the baby to react in a certain way and one of those reactions is seeing the heart rate go up. His heart rate was going down, which is the opposite of what they’d like to see, so they decided pretty much on the spot that they need to do a C-section and get him born, and figure out what was going on.
They knew pretty much right away that he had a pretty serious heart issue at play, called an ambulance to come up, a pediatric ambulance to come up from Portland to Farmington and pick him up.
It was interesting. We’re standing in the neonatal unit which some odd reason was just us there that night, which I think was fairly unusual and he had pretty much every piece of equipment in the room hooked up to him.
Farmington is where my family is from. My mom grew up there and her parents grew up there, and their parents grew up there, so I go way back in the community there. I’m leaning against the wall, looking at Scotty hooked up to all these equipment, and I look over to my right and there’s a donor plaque for a capital campaign that it happened when they built the hospital, built that part of the hospital, and it said “All the equipment in this room provided by Jimmy and Barbara Flint,” and those were my grandparents, so they were Scotty’s great grand parents.
I’m getting sort of emotional as I’m talking about it right now and it kind of told me right from the start that everything’s going to be okay. It was just one of those moments where it’s like you look around and know there is something bigger at play here, but it did have a calming effect.
We found out the next morning that tetralogy was the diagnosis and the cardiologist said “It’s a serious condition, but we know how to correct it, we know what to do, and we’re going to do everything we can to make sure he’s okay,” and they did. The heart issue, right now, is kind of in the background. It’s a yearly check up, but that’s on our mind on a regular basis.
Lisa: Scott, Thank you for the work you do at the Morrison Center and for bringing Scotty onto the world. Thank you, and Lisa, because obviously, he is, I would say, an ambassador, an ambassador of life perhaps.
Scott: Yeah, that’s kind of the way we look at it, I think.
Lisa: I encourage people who are listening who would like to find out more about the Morisson Center to google the website and learn more, and perhaps donate and somehow contribute to the efforts because this … It may seem as though this is something that impacts a small number of people, but as you’ve shown even through your experience with Scotty, it usually has a much broader reach than we realize. Thanks for being with us today.
Scott: It’s my pleasure [inaudible 00:10:12] me.