Kishore Vellody, MD, has been medical director of the Down Syndrome Center of Western Pennsylvania at UPMC Children’s Hospital of Pittsburgh since 2009. Established in 1989, it is the second oldest Down syndrome clinic in the United States. UPMC HealthBeat spoke with Dr. Vellody about this unique asset serving children and adults with DS and their families throughout western Pennsylvania and beyond.
What Is the Down Syndrome Center?
The Down Syndrome Center of Western Pennsylvania provides comprehensive, coordinated clinical care for children with Down syndrome (DS), as well as education, consultation, and support for their parents and families. Formed by a group of parents, the center addresses the specific needs of children with DS and their families here in western Pennsylvania. It gives parents access to experts in the field, connects them with other parents, and provides useful information and guidance about DS so they can further help their children.
The center is supported solely through charitable gifts from thousands of donors. From its main base at UPMC Children’s, the center has expanded to include locations in Pittsburgh’s North Hills and South Hills communities as well as Erie, Johnstown, and Sharon. With its six locations, the Down Syndrome Center now cares for more than 600 pediatric and 200 adults patients each year.
When Do Parents Usually Learn About the Center?
Parents are often referred to the center as soon as they receive a DS diagnosis. Parents of newborns are usually referred within the first two months of the baby’s life. The earlier we see parents, the better we can help them prepare emotionally and teach them about their child’s diagnosis. Public misconceptions about DS still abound.
How Do You Comfort Parents Who Are Sad to Learn Their Child Has or Will Have Down Syndrome?
First, I try to validate their emotions because parents can have any number of feelings after the child is born. Typically, parents have questions about the diagnosis and their child’s future. Will my child ever walk, talk, or go to school? Will he or she ever become independent, have a job, get married, drive a car? There are so many questions about what the future holds and what the diagnosis means for them and their families. I tell them that they don’t have to abandon their long-term dreams for their child with DS — they may just have to alter them a bit. With a loving home, early intervention, inclusive education, and preventive medical care, these children can reach their fullest potential.
I also like to cite a little bit of research about the personal impact of having a child with Down syndrome. Many parents are surprised to learn that the impact is overwhelmingly positive. In studies published in the American Journal of Medical Genetics, 96% of parents said they do not regret having a child with Down syndrome, and 96% of siblings said they would never trade their sibling with Down syndrome for a sibling without DS. And fully 99% of people with Down syndrome said that they are happy with their life.
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How Does Down Syndrome Affect a Child’s Development?
Children with Down syndrome usually have developmental delays and hit milestones later than their peers. For example, most babies usually sit up at 5 to 6 months of age and crawl around 7 months. Babies with DS take a little longer — generally sitting up at 7 to 8 months and crawling by 10 to 12 months. While they may be a little slower hitting those milestones, they get there — for the most part!
What Are Parents’ Most Common Worries for a Child With Down Syndrome?
The main worry usually is that their child will face significant developmental challenges in life. But there are varying levels of disability with DS. Some children will have more challenges, but most do very well with appropriate interventions and therapies. The key to helping kids develop to their full potential is to enroll them in county-based early intervention services soon after birth. Pennsylvania also has excellent community services and supports for children with DS and their families, and the Down Syndrome Center helps connect them to these resources. When kids with DS get early intervention, there are dramatic improvements in their development.
Some parents worry about the financial hardship of paying for their child’s medical care. The fact is that DS does not cause a significant medical burden for families. Studies show that the average cost for a child with DS is about $60 to $70 more per month than for a typically developing child. And because children with DS qualify for medical assistance in Pennsylvania, most if not all extra medical costs and copays are covered.
What Is the Usual Plan of Care for New Patients at the Down Syndrome Center?
The baby’s first visit is usually between 1 and 2 months of age. We want to see them every six months for the first two years of their lives, then annually as they grow up. We follow the American Academy of Pediatrics guidelines for children with DS which call for certain tests as preventive care. The child sees a nurse, clinic coordinator, and doctor at every visit to ensure that we cover all the potential health, educational, and developmental issues that might arise. We keep the child’s primary care doctor informed so they can concentrate on well visits, sick visits, and immunizations as the child grows.
Is the Down Syndrome Center Totally Focused on the Child’s Health?
The center takes a holistic approach that focuses on much more than medical health. When the child reaches preschool age, we talk at every visit about education — of the parents and the child. We educate parents so that they can become strong advocates for their child because kids with DS have the right to attend neighborhood schools in inclusive classrooms and take part in community recreational programs. Adolescents and adults with DS have the right to seek ongoing education, work and live in the community, socialize with friends, and contribute at home, in the workplace, and to society.
Parental advocacy is important because that has helped fuel the educational evolution for kids with DS over the years. The old model of learning separated kids with DS from their peers. That was not good for the child with DS because it limited their learning and socially ostracized them. Now, most kids with DS are in the same classroom with their typical peers, and everyone in the classroom benefits intellectually. Children with DS work hard to learn in the classroom and research has shown that test scores for their classmates actually go up when they have a child with special needs in the class. In addition, other kids benefit socially by improving their compassion and empathy skills through interaction with peers with special needs.
Do Patients Come To the Center for Issues Usually Treated by a Primary Care Doctor?
Yes, sometimes. As an example, ear infections are a common problem for kids who have DS. If the child has a few ear infections each year, their primary care doctor will treat them with antibiotics. But if the child has five or more ear infections, we can refer them to a pediatric ear, nose, and throat specialist here at UPMC Children’s who has developed special expertise in DS.
The same goes for treating other issues, such as congenital heart defects, which also are common in children with DS. Our relationship with a child’s other doctors is a collaborative one — we essentially play the role of quarterback for the entire health care team. If a child has surgery to repair a congenital heart defect, we help to make sure they stay up to date with cardiologist visits, echocardiograms, and other testing. We also make sure that they receive any immunizations recommended by their cardiologist or pediatrician.
Does the Plan of Care for Children with Down Syndrome Change Over Time?
Yes, and that’s what makes the Down Syndrome Center unique. Because DS is a lifelong diagnosis, we are organized internally by age group. I see children from birth until they’re preteens. Children ages 13 to 14 are cared for by Andy McCormick, MD, who specializes in the adolescent years and prepares them to transition to adult care around age 18 or 19. At that point, patients transition to UPMC Montefiore where internal medicine specialists Peter Bulova, MD and Anna White, MD oversee their care throughout adulthood.
Do People with Down Syndrome Have Specific Health Risks as They Age?
They are at risk for many of the same aging issues as their peers, including weight gain, diabetes, and cataracts. However, older adults with DS are at a higher risk for early-onset Alzheimer’s disease, osteoporosis, sleep apnea, and other age-related conditions.
What Are the Health Benefits of Down Syndrome?
Down syndrome seems to have cardioprotective effects. In older adults with DS, heart attacks or strokes are uncommon because they don’t seem to develop coronary artery cholesterol plaques, high blood pressure, or blood clots as often as the general population.
You Are Very Passionate About Caring for Patients With Down Syndrome. Why Did You Choose This Field?
I am very passionate about Down syndrome because I have a personal connection. My older brother, Das, has DS — so you could say I was born into the DS community. My parents raised my older sister and me in such a way that there was always acceptance of DS in my family. Das is 45 now, and we are still very close. When he was born, there was nothing like the Down Syndrome Center for my parents or for him — just some informal support groups — so coordinated care was sorely lacking. This is why it is my passion for all of our patients and their families to feel supported and connected to our center.
When I came to UPMC Children’s as a hospitalist in 2005, I made it a point to care for all the inpatients who had DS. I became the center’s medical director following the death of William Cohen, MD, the first medical director, in 2009. I also participate in a number of DS-related professional organizations and served as president of the National Down Syndrome Congress for three years. DS has become my calling.
1Having a son or daughter with Down Syndrome: Perspectives from mothers and fathers. Skotko BG, Levine SP, Goldstein R.Am J Med Genet A. 2011 Oct;155A(10):2335-47. doi: 10.1002/ajmg.a.34293. Epub 2011 Sep 13.PMID: 21915989
2Having a brother or sister with Down syndrome: Perspectives from siblings. Skotko BG, Levine SP, Goldstein R.Am J Med Genet A. 2011 Oct;155A(10):2348-59. doi: 10.1002/ajmg.a.34228. Epub 2011 Sep 9.PMID: 21910244
3Self-perceptions from people with Down syndrome. Skotko BG, Levine SP, Goldstein R.Am J Med Genet A. 2011 Oct;155A(10):2360-9. doi: 10.1002/ajmg.a.34235. Epub 2011 Sep 9.PMID: 21910246
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