Celebrating World Down Syndrome Day with Halie McClaran, PT, DPT

Meet Halie McClaran, PT, DPT, a pediatric physical therapist who is also mother to 14-month old Lane. Blonde-haired and blue-eyed, with a smile that lights up his entire face, Lane is the picture of sweetness. He’s the star of Halie’s Instagram, whose feed is devoted to photos of the cherubic, smiling baby reaching milestone after milestone, accompanied by captions celebrating each accomplishment. Halie is like any other mother cheering on their child, but Lane’s milestones feel extra special because he happens to have Down syndrome. Down syndrome is a condition in which a person has an extra copy of chromosome 21, and is the most common chromosomal condition diagnosed in the United States. Although there are some common challenges and characteristics found in people with Down syndrome, each person with Down syndrome is a unique individual with different abilities, strengths, and weaknesses. Every year on March 21st, people all around the globe celebrate World Down Syndrome Day to raise public awareness, and advocate for the rights, inclusion, and well-being of people with Down Syndrome. In honor of World Down Syndrome Day, we spoke with Halie to share her story and all the ways that Lane is exactly who he was meant to be.

Q: Can you tell us a little bit about your journey with your son’s Down syndrome diagnosis?

HM: We actually didn’t know that Lane had Down syndrome until he was born! At 14 weeks, we submitted the NIPT blood testing, hoping to get an early peek at the gender! Well, I never was able to log into the portal to see the test results. My next appointment was at 18 weeks for the anatomy scan, and my doctor told me that somehow during the shipping process or at the laboratory, they lost my blood sample. He proceeded with the anatomy scan, where everything looked absolutely perfect, and asked if I would like to repeat the NIPT. We declined since everything in the anatomy scan came back healthy, we found out we were having a boy, and we figured that, due to my age, our risk of having a baby with Down syndrome would be very low. Fast forward several months later, I was induced due to concerns of IUGR (intrauterine growth restriction) at 39 weeks.

After 12 hours of not progressing, my labor ended with an emergency C-section due to the stress that the baby was under. When the nurses showed him to me, I initially had a gut feeling that something was different or unexpected, based on some of his physical traits. My husband and Lane were sent to postpartum while I was getting closed up on the operating table, and that’s when the doctor came in, sat down next to me, and put his hand on my shoulder, and I immediately knew what he was going to say. I will never forget his words: “Halie, everything went great and he’s beautiful, but we think he may have Down syndrome. I’m sorry.” I immediately started crying, not because I was sad, but because I realized things were going to be different than the life I had originally imagined. I was happy, but I was also very scared. I wish I could show myself what our lives are like now. I wouldn’t have shed one tear.

If you get a chance, read the poem “Welcome to Holland” by Emily Perl Kingsley.

Q: As a pediatric physical therapist, you have the knowledge, experience, and resources to do physical therapy with your son at home. When your baby received his diagnosis, did you immediately realize how advantageous your career path would be for you as a parent?

HM: I definitely felt more prepared and knowledgeable on what to expect and what to advocate for. My husband has said several times that he is so lucky to have a wife in this career path because he wouldn’t know what to do otherwise. Understanding different medical conditions that can accompany Down syndrome, knowing how some of his physical characteristics may affect him as he develops, and being aware of what resources are available have all been tremendously helpful.

Q: Do you manage your son’s physical therapy or does he have a different physical therapist?

HM: He sees someone else for physical therapy. I like to step back and just be a mom at his appointments, being there for comfort or encouragement. But, I definitely sneak extra work into play at home!

Q: In what ways has your son surprised you and inspired you?

HM: I have believed in him since day one, so nothing about him has really surprised me, other than how “normal” our lives are. I think that when people hear that I have a child with Down syndrome, they automatically assume our lives are much different than theirs. In reality, it’s not. We may have a few extra therapy or doctor appointments here and there, but everything else is pretty much the same! He has not only inspired me, but so many people around me and around the world. He is so brave at all of his medical appointments and is an extremely hard worker.

Q: What have been the most positive aspects about parenting a child with Down Syndrome?

I obviously love every single part about being Lane’s mom. He is so loving, has the most golden smile, and makes every day brighter. I love seeing him hit his milestones, whether it be gross motor, fine motor, speech, or feeding, because I know how hard he has worked to get there!  Other than him being an absolute joy, I really like the community support and the relationships I built with other families of children with Down syndrome!

Q: Alternatively, what have been the biggest challenges that have come with your son’s diagnosis?

HM: The medical side of things has been hard on us. Seeing him being poked so much for blood work, being attached to a machine for a 24-hour EEG, or learning about his heart defects with the possibility of heart surgery has all been very hard emotionally.

Q: How has becoming a mother impacted you?

HM: I absolutely LOVE being a mom, and especially Lane’s mom. It has definitely made me more compassionate and selfless. I also can definitely relate better to the families of kiddos I treat for PT.

Q: What does World Down Syndrome Day mean to you and your family?

HM: It definitely means a lot. We love to celebrate Lane and all of the other amazing individuals with Down syndrome across the world. We love to participate in all of the traditions like the National Down Syndrome Society (NDSS) 3-21 walk/run or wearing wild, non-matching socks. 

Q: If you could describe your son, Lane, in five words, what would they be and why?

HM: This is a hard one! He is so amazing, it’s hard to choose just five. I would have to say: courageous, expressive, curious, loving and joyous.

Q: What would you say is the biggest misconception people have about Down syndrome?

HM: I would have to say one of the biggest misconceptions is that individuals with Down syndrome are incapable and society puts a cap on their abilities. Some individuals may need extra practice or a little extra assistance, but these individuals are very much capable of doing whatever they put their minds to!

Q: What is something you wish other people knew about your son and other people with Down Syndrome?

HM: That you should ALWAYS use person-first language. For example, it should be “This is Lane, and he was born with Down syndrome” not “the Down syndrome baby” or “Down’s baby.”

Q: Is there a lot of support and resources out there for parents of children with Down syndrome, or is there room for improvement?

There are quite a bit of resources out there, which was extremely helpful as a new parent navigating Lane’s postnatal diagnosis. We belong to our local Down syndrome association, and have loved getting to know the other families. There are also online support groups called the Down Syndrome Diagnostic Network (DSDN) or the National Down Syndrome Society (NDSS). There are also many other organizations or foundations out there, such as Gigi’s Playhouse, Zoe’s Toolbox, Extra Lucky Moms, etc. Although there are many support groups and resources out there, we were not provided any resources at birth. I definitely think this is where we need to see improvement!

Q: What advice do you have for other parents who are just finding out about their child’s Down syndrome diagnosis?

HM: First off, take a deep breath–everything is going to be OK! Second, try to connect with other local families or even families on social media! Seeing how beautiful these families were and learning from them was definitely a big help for me! Don’t be afraid to ask questions and remember that you are always your child’s biggest advocate! Anyone receiving a new DS diagnosis or that has any questions is definitely welcome to reach out to me via email (halie.mcclaran@gmail.com) or Instagram (@haliealane).