Down Syndrome Association of Pittsburgh, Family Life (with Dr. Nowalk)

Down Syndrome Center at UPMC Children’s Hospital of Pittsburgh

Andrew Nowalk, MD, PhD, a pediatric infectious diseases specialist, discusses his background as a physician and parent, along with infectious issues faced by children treated at the Down Syndrome Center at Children’s Hospital.

Released: 2/20/13


Dr. Vellody: Hello everyone and welcome to the Down Syndrome Center of Western Pennsylvania podcast. I’m your host, Dr. Kishore Vellody. As we discussed on the last podcast, our hope is to use this media technology to bring you up to date news and information regarding Down syndrome. We plan to invite several specialists with expertise in Down syndrome to discuss their thoughts regarding the care of children with Down syndrome and to answer your questions. Remember, you may send any questions you have to Remember, we can’t answer specific questions related to your child or loved one with Down syndrome. However, we are able to answer general questions about Down syndrome and will try to address your questions on future podcasts. With us for the next two podcasts is Dr. Andrew Nowalk who is a pediatric infectious diseases specialist with many reasons why he has interest in Down syndrome, as you will soon discover. Hey, Dr. Nowalk, thanks so much for being here with us today. Before we get started, can you just tell us a little bit about your medical background?

Dr. Nowalk: Sure. I want to thank you for inviting me on. I’m a local product. I went to medical school here at the University of Pittsburgh and did my pediatric training both in general pediatrics as well as pediatric infectious diseases here at Children’s Hospital. I have been a faculty member at Children’s since 2005.

Dr. Vellody: Thanks, Andy. I’ve got to tell you, it’s always really helpful to be able to get your opinions on those pesky infectious issues that affect the kids that we follow at the Center. And in our next podcast, I’ll be asking you to share those opinions on some of the infectious diseases topics that I’m sure are on the minds of our listeners. But, I happen to know that you’re involved in the Down syndrome community in many other ways. Could you please tell us a little bit about this?

Dr. Nowalk: I also wear some other hats that are relevant to the Down syndrome community. Since 2008, I’ve been a member of the board of the Down Syndrome Association of Pittsburgh which is the major community group that works to improve the lives of people with Down syndrome in the Pittsburgh area.

Dr. Vellody: Let me just say that the Down Syndrome Association of Pittsburgh has some truly amazing people that work there. Can you give our listeners a little more information about exactly what the association does?

Dr. Nowalk: The Down Syndrome Association of Pittsburgh has been a group in the Pittsburgh area since 1988 as I said, working to improve the lives of people with Down syndrome. We are a community group, non-profit, completely volunteer driven. We really do a number of things to try and help out both children and adults in Pittsburgh with Down syndrome. One of the main things we do is sponsor events, both fundraisers and social events. Our big event in the fall is the Three Rivers Dash for Down Syndrome, and our major event in the spring and summer is a golf outing. The money that we raise from this goes to a number of programs. We provide packets for parents who have a child born with Down syndrome in the hospital. We provide money and support to the Down Syndrome Center of Pittsburgh for the pediatric program. For the last 10 years, we provide the major support for the adult Down Syndrome Program at Montefiore hospital. So we have a number of different activities, and we are always looking for volunteers to help us out.

Dr. Vellody: Thanks, Andy. As you know, Sheila Cannon shared about the role that the Down Syndrome Association played way back in the late 1980s to start this center. It always amazes me that you’ve got this wonderful group of volunteers at the DSAP, who then lead a big community of people interested in Down syndrome, who they themselves then donate their own time, efforts, and finances towards improving the lives of people with Down syndrome. It takes a lot of work to do what you guys do each year! Without the generous support of the Down Syndrome Association, there’s no way that we could do what we do at the center. So, let me just take a moment and offer my heartfelt thanks to the members of the Down Syndrome Association and all those people in the community who help support it. You have made a huge difference in the lives of people with Down syndrome in the Pittsburgh area!

All right, at this point, I’m going to shift the topic a little bit. You obviously have a real interest in Down syndrome and one that seems to go beyond any book knowledge that you learned during your medical training. Would you mind sharing with our listeners about why you are so passionate about helping people with Down syndrome? I mean, just tell us how you first got involved.

Dr. Nowalk: So that’s a good question. I got involved in Down syndrome on March 7, 2006 when my son Peter was born. Peter came to us a little bit on the early side. He was 7 weeks early and the diagnosis of Down syndrome was made on the day he was born. That was the day I really started becoming involved in Down syndrome. I was at first like a lot of parents, involved in just reading materials and trying to support the local association. I then became involved in the Down Syndrome Association. I’ve also professionally taken a big interest in Down syndrome ever since my son’s birth. Like many parents of children with Down syndrome, we suffered through a lot of infections in the first few years – pneumonias and ear infections. So I’ve taken a big interest in my own infectious disease practice in trying to help out children with Down syndrome who have infectious complications of having Ds.

Dr. Vellody: Thanks, Andy, for sharing about Peter. In the next podcast, we’re going to dive in deeper and discuss some of those infectious issues that you see in children with Down syndrome. But let me ask you something that families often ask me at the center. When I first meet a family after their child with Down syndrome is born, they often ask me what its going to mean for their family. So, now that Peter is almost 7 years old, let me ask you. How has Peter affected your family and how it functions?

Dr. Nowalk: I think Peter has changed our family dynamic in a lot of positive ways and in a lot of challenging ways at the same time. Having a child with Down syndrome who is not your first child does, I think, change the experience a little bit. You have some familiarity with parenting. I think the one thing I always try to stress with families of children with Down syndrome who’ve just received the diagnosis is they’re children. They are going to require all the normal parenting strategies that you use along the way as well as some adaptation for the fact that when they do things, they often do it at a different schedule, and they do it in their own way as compared to your other children. I think it does bring your family closer together. I think it’s been our experience as well as the shared experience of most folks I know (and there’s actually been a little bit of research to suggest) that the siblings of children with Down syndrome have in some ways a more positive experience because they grow up with someone special. I think as parents it introduces you to the world of medicine in sometimes a not entirely positive way. You have to learn to navigate a lot of practitioners. It also gives you an opportunity to meet people like the folks who run the Down Syndrome Center who can really have a positive effect on your life. Certainly, professionally, it made me a much better physician having had a child with Down syndrome.

Dr. Vellody: Andy, I could not agree more. I’ve definitely seen that doctors who are exposed to people with Down syndrome – well, they just seem to have a much more compassionate and caring attitude towards their patients with special needs in general. I think that sometimes, when we learn all those potential medical issues that can happen in Down syndrome, it can make it difficult to see someone with Down syndrome as an individual person and not just a collection of medical problems. I know that’s why we have both been so passionate about getting medical students exposed to people with Down syndrome early in their training. I think it’s important for our listeners to know that you, Dr. Bulova from the adult center, and I have created a curriculum at the medical school where we bring children and adults with Down syndrome to meet and interact with the medical students in their first week of medical school – while their white coats are still white! I think this course impacts these future doctors so much more than they can possibly realize.

Let’s get back to our prior topic. Andy, as you know, I have a family member with Down syndrome as well. My brother Das and I have always been best friends, and I really can’t imagine who I would have become if it wasn’t for him. So sibling relationships in families with Down syndrome are a real interest of mine. You touched on it a little bit, but could you share with us any personality traits that you’ve noticed in Peter’s siblings over the years since Peter was born?

Dr. Nowalk: I think the changes in Peter’s brothers – he is the youngest of 3 brothers – are ones that you can take a little while to notice. The ones that I notice the most is, number one, acceptance. My sons really don’t look at Peter as anything different from them. They just look at him as their brother in the same way that one of them has blue eyes and one of them has brown eyes. One of them has an extra chromosome. They don’t really assign it any greater or lesser importance than that. That patience and acceptance of who he is I find spreads to other areas of their life. They tend to be a little bit more able to work with people and be friendly with people who may be different from them because of the experience. I think patience. I’m going to bring up the word patience because I do notice that just as we’ve had to adapt as parents, being more patient with Peter’s development (it takes him a little bit longer to do things and to learn certain things), they seem to be a lot more patient with him than I would expect. Certainly, they’re more patient with him than they are with each other! So I think they really have adapted in some ways to Peter and those adaptations have been really good for them. I look to them for lessons about Down syndrome because they always get less caught up in some of the day to day worries that Peter’s Mom and I have. They are more focused on the fact that his a boy, and he is their brother. They want to have fun with him and roughhouse with him. They calm us down and make us treat Peter a little bit more evenly that we would without them.

Dr. Vellody: That’s a great perspective. I think that the published data that’s out there on sibling relationships in Down syndrome is just so amazing. I mean ffamilies can get so worried sometimes about whether the siblings will feel an extra burden or pressure on them. But, even beyond the published stuff that’s out there, my own observations of other siblings, as well as my own experience, points towards a usually very positive sibling response. I’ve met many siblings of the patients I follow at the Down Syndrome Center, including Peter’s siblings, and I can easily see the positive impact that having a sibling with Down syndrome has had in their lives just by interacting with them.

Well, Andy, I think that just about wraps up our time for this podcast. Thanks for joining me today and sharing about the Down Syndrome Association and how Peter has impacted you and your family. We’ll look forward to having you back next time to answer some infectious diseases questions. Until then, thanks again to our listeners and please let the other families know about this podcast. Please send us your questions and suggestions again to Bye bye.

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