What a Stanford Medicine Children’s Health Doctor Has Learned from Her Child with Down Syndrome

In recognition of Down Syndrome Awareness Month, we sat down with Raquel Nieves, MD, of Stanford Medicine Children’s Health and Bayside Medical Group to talk about special needs children in her practice, including those with Down syndrome.

Q: From your experience, what different skills might a parent look for when choosing a pediatrician for his or her child with special needs?

Dr. Nieves: Essentially, a pediatrician who’s willing to listen, who’s open minded and who has an attitude to serve others. In addition, you need to find a doctor that fits your personality since this will hopefully be a long-term relationship. The doctor also should be knowledgeable about children with special needs or, more importantly, be willing to learn from others who are more experienced.

Q: I know that you have a personal interest in special needs children. Can you tell us a little bit about your daughter Anna and her special needs?

Dr. Nieves: We knew when I was 14 weeks pregnant that she was going to have Down syndrome. The whole first year for me was a big blur since she had three surgeries and five hospitalizations all within the first year of life. I felt like I was living in the hospital, and it was a rough time because I also had two others to care for, her older sister and brother. Now, (at age 4), Anna continues to have multiple appointments and therapies that we manage five times a week to include speech, occupational and physical therapies. Additionally, she participates in extracurricular activities that build her core strength and balance such as swimming and horseback riding. It all keeps me very busy, however, seeing her progress brings me such joy and that is what keeps me motivated.

Q: How do you feel raising Anna has changed how you practice medicine?

Dr. Nieves: It has definitely made me more patient in general and much more compassionate toward families with children with special needs. Now that I’ve been on the patient end of things, I feel like I can truly relate to parents. I can understand the frustrations. I want to know what each individual parent or caregiver is dealing with in regards to their special needs child. Being in the unique position of understanding the medical side as well, I look for opportunities to identify the barriers that our families face and try to fix them with the goal of making our medical system better equipped to help our families.

Q: What lessons have you learned as a physician raising a child with special needs?

Dr. Nieves: What we say as doctors truly matters. Parents are listening and we need to be very careful with our communication. The other lesson that I learned is that the parent of a child with special needs should be an advocate for his or her child. As long as you advocate in a respectful manner, then everyone benefits and this is because the doctors who are delivering the care also care about your child. Ultimately, we all have the same goal in mind as the caregivers: to do what’s in the best interest of our children.

Q: What has Anna taught the rest of the family?

Dr. Nieves: Anna has taught our family so many lessons, to include love and compassion for all. Her friendly demeanor wherever we go spreads cheer and joy to all who are around her. She has taught our family about compassion in a way that is beyond learning it in a book. You can say, “be kind to people,” but it’s different when you have to live it day in and day out. My children, whether they wanted to or not, had to learn to give and sacrifice for another. They had to learn early on that life is not just about them, but about loving, helping, and serving others. They learn so much from Anna and they, too, teach so much to Anna.

Q: How can parents advocate for their child with special needs, especially when it comes to health care?

Dr. Nieves: The best way to advocate is to speak up. If something bothers you, speak up about it. You are your child’s voice. Another thing that I feel very passionate about is to advocate for your child, not only in the medical setting, but in every setting, especially in an educational setting as well. I am a strong advocate for inclusion in schools.  Done correctly, everyone, including the children without special needs, benefits with more cooperation, better behaviors, a sense of purpose, and higher test scores. I really feel that this is what humanity is all about. A final thought: we need to be expecting a lot out of our children, no matter what the disability is and no matter how severe. It doesn’t matter what IQ or what special needs a child has, all children have the ability to learn and progress, and it is our job as caregivers and medical providers to try to move them forward one step at a time. 

Read more about Dr. Nieves in Bay Area Parent: “Advocating for Your Child” (pp. 14-16)