Meet the Oakley family, who delivered all three of their babies with Dr. Meghan Nichols at Kansas City ObGyn - including their son Baker, who was diagnosed with Down syndrome in utero. We caught up with mom, Mackenzie Oakley, to find out how their very special family is doing now!
Kansas City ObGyn: You mentioned Dr. Meghan Nichols delivered all three of your babies! How was your experience? What kept you coming back to Dr. Nichols with each pregnancy?
Mackenzie Oakley: Yes! She delivered all three! I started seeing Dr. Nichols before she helped establish Kansas City ObGyn and of course wanted to follow her to the new practice. I felt comfortable with Dr. Nichols from day one and when my husband and I decided it was time to start a family, I knew I wanted her support during pregnancy. Dr. Nichols isn't an alarmist, she always presents the facts and if there are issues or concerns, she always makes sure to follow up and give us the information we need to to have the best course of care in place.
KCO: When were your babies born? What are their names?
Mackenzie: My husband, Justin, and I welcomed our oldest daughter, Gracyn, in January 2013 followed by our daughter, Leighton, in December 2014. Our son, Baker, was born in August 2017. It's kind of crazy to think we had three kids in less than five years but we're enjoying the chaos so far!
KCO: What are your kids' personalities like?
Mackenzie: Gracyn is our sensitive soul. She's kind and likes to follow the rules and she's the best big sister. Leighton is a spitfire. I'm told this is true of a lot of second-born children! She's wild and loud. She's very strong-willed and isn't afraid to voice her opinion. She's also sweet and funny. We're still getting to know Baker but his personality is coming out more and more each day. He's the sweetest little baby and we love him so much!
KCO: You mentioned one of your children had special needs diagnosed in utero. Tell us more about your son's story. What was it like to hear the news? What thoughts or questions went through your head?
Mackenzie: Dr. Nichols and her team discovered Baker's congenital heart defect when I was 24 weeks pregnant. The immediate news was crushing. It was further compounded by the fact that Dr. Nichols thought his type of heart defect was also commonly seen in kiddos with Down syndrome. My head immediately started swirling with worst-case scenarios and I think it was the first time I broke down crying somewhere other than my own home! My husband quickly ushered the girls out of the room and gave me a moment alone to gather my thoughts. Our first two kids were completely healthy so to hear your unborn baby may have serious health issues is very surreal. Dr. Nichols referred us to a high-risk maternal fetal medicine doctor who would take a closer look and get us some more answers. We left Dr. Nichols’ office that day with a ton of questions but also felt confident that we had the best doctors helping us figure out the next step.
KCO: How did you navigate the pregnancy and birth with your new knowledge about your son's special case? Did you receive any special care to ensure the li’l dude was born safe, healthy and happy?
Mackenzie: Baker's heart defect was confirmed at 25 weeks and after results from my genetic blood test came back, we were given a 95% chance he'd be born with Down syndrome. We were immediately seen by the pediatric cardiologist on staff at Overland Park Regional who went over the type of defect Baker had and, more importantly, how it could be fixed after he was born. We were also given pamphlets and books about Down syndrome and were given the contact information for the Down Syndrome Guild of Greater Kansas City so we could start learning about Down syndrome and what that diagnosis would mean for Baker and our family. Dr. Nichols even called me at home after that appointment to check in and see how we were all handling the news. I was seen by the maternal fetal medicine doctor and pediatric cardiologist every month and started weekly biophysical profiles in Dr. Nichols' office at 28 weeks to keep a close eye on Baker until delivery. Everyone we were working with had my and Baker's best interests in mind and while they weren't ideal circumstances, it was kind of nice to see his sweet face during the sonogram every week!
KCO: What advice do you have for families who find out they are expecting children with special needs?
Mackenzie: Find and work with a doctor you trust. You have to feel comfortable asking questions and need to feel like your needs are being met. Dr. Nichols was so great about making sure I was OK - not just my baby. She offered up resources for therapy or counseling should we need it and she made it a point to ask how I was doing at every appointment to make sure we stayed ahead of any negative feelings that could come along with a stressful pregnancy. I also think it's important to share your story as a way to connect with others who may have walked the path before you. We shared the news with our friends and family from the very beginning via our family blog and social media as a way to keep them informed; at the same time, it opened the door for me to find other moms of kiddos with Down syndrome - many of whom have the same heart defect as Baker. Within a matter of days I was talking with other women who had been in my shoes. I could ask them questions and express concerns. They validated my feelings and reassured me that we could handle this. It helped drive home that we weren't alone in this journey.
KCO: How are all the kids doing today? How are you doing today, mom?
Mackenzie: The kids are all doing amazingly well! The girls have easily adjusted to having a little brother. It's like he has two extra little mamas looking out for him! Baker is doing well, too! He does indeed have Down syndrome and we're currently waiting on a date for his open heart surgery to repair his defect. It's a little nerve-wracking playing the waiting game but Baker is growing, gaining weight like a champ and is staying healthy. I still can't believe I have three kids! It's a wild ride, that's for sure. We're a complete mess most days but I love every minute.
KCO: What's it like being a mom of three? How about in a family with a kiddo with special needs, and balancing that with the demands of a family of three? How has your family adapted to this new world? Any pointers for other families with similar scenarios?
Mackenzie: Being a mom to three kids is wonderfully exhausting! They keep us busy and entertained and it's so fun to watch them grow up together. Having a child with special needs is hard. It adds another level of stress and worry but we're quickly realizing that hard is not the same thing as bad. Baker requires a lot of doctor appointments and will be starting weekly therapy sessions soon. It's a lot to coordinate but he's so worth it. We've felt so much love and support from our family, friends and neighbors as well. They've played an integral part in our story. Whether they're volunteering to watch the girls or just offering a shoulder to cry on, they've all become part of our village when it comes to raising these kids. Learning your child will have special needs can feel very isolating and scary. I've heard a lot of stories of moms getting a prenatal Down syndrome diagnosis who had a very negative experience. It doesn't have to be that way. I'm so grateful to Dr. Nichols and the Kansas City ObGyn staff for handling our situation with grace, for being educated and for helping us through a very stressful pregnancy. Because of them, Baker was born healthy and we were more than ready to welcome him into our family. My advice to other families going through a similar experience would be for them to reach out - to your doctor, to your family, to a friend. It can be hard at first, especially if you're feeling overwhelmed or even ashamed, but once you do, you'll quickly find your tribe. There were so many people who helped our family process everything in the beginning. I hope we can now pay it forward and be a resource for others.