Cardiac PFAC Members

My husband, Jake, and I met and began dating in 2009 and got married in 2020. We have three children: Tyson is 17, Haley is 8 and Ethan is 5. Our kids are our biggest heroes; they have been fairly regular patients at Children's Mercy. Ty has Von Willebrand Disease, Haley is on the Autism Spectrum and does Occupational Therapy and she also had a Cardiac workup in 2021 for a heart murmur, which was found to be benign and Ethan is our Heart Warrior.   We are a very outdoorsy family!  We love taking the kids to the lake and spending weekends relaxing by the water in our camper!

We had no plans to have this experience! Ethan was born undiagnosed and for the first several hours seemed to be a healthy baby. Then everything shifted and we were sent by ambulance to Children's Mercy! We couldn't have asked for better care at a worse time! We came here in the height of the pandemic so that was an added stress. Pre-Surgery Ethan was extremely sick and his surgery was delayed until he was 20 days old but after that he got better very quickly! All of the doctors and nurses we encountered were AMAZING!  I became a Cardiac PFAC member simply because I want to give back to the hospital that saved my baby boy!

My husband and I have three teenage children. Riley and Lindsey who are both heart healthy, and Bryce who was born in 2005 with Hypoplastic Left Heart Syndrome. We also have two Golden Retrievers, Otis and Clyde.  Our favorite activity to do together as a family is to travel. We love to go to the beach, go hiking in the mountains, or sightseeing and trying new foods all over the country.

We have received outstanding care at Children’s Mercy since before Bryce was born. He was diagnosed prenatally at CM and has had countless surgeries and procedures in his life, all done at CM. I was so inspired by the nursing care that Bryce received that I went to nursing school once he was in kindergarten. I am proud to say that I am now a nurse manager at CM. We are thankful for all that CM has done for our family. It’s impossible to put into words how much we value CM, as they truly saved our son’s life. They have provided family centered care throughout the years, allowing us to truly be a part of his healthcare team. We are so grateful to have a hospital so close to home that offers top-notch quality of care combined with a health care team that provides an outstanding level of compassion and empathy.

I thought it would be a valuable experience to be a part of a collaboration between the Heart Center and parents of children who receive cardiac care at Children’s Mercy, and that it would be an opportunity to give back to the organization for all they have done for our family. I appreciate that CM values the input of the caregivers and has created this partnership. I am honored to be part of a team that helps give feedback, guide future change & continue to look for ways to maintain the high level of patient centered care that we have all come to know.

My husband, Eric, and I met during college in 1995 and have been together ever since. We have two amazing daughters, Laney and Collins, who are very close (most days!) despite a six-year age gap. We rescued our Border Collie mix pup, Forrest, a few years ago and he adds excitement (and maybe some anxiety) to our household.   Our family loves to travel, explore new things, eat out and generally spend time together – we like each other!

While we did not have Laney’s three planned surgeries to complete her Fontan at Children’s Mercy, we have received all our care here for the 13 years since then. In addition to Cardiology, we see a host of specialists as well, all working together to give Laney the greatest opportunity to thrive. Our journey started out rocky, but all this time later, we’re embracing it and have an amazing teenager on our hands who is not stopped by half a heart at all!

As my oldest daughter, Laney, has grown up and now thrived with a complex CHD, it has always been important to me to get involved in the heart community in a variety of ways. What started as a way for me to cope when we started this journey over 15 years ago, has turned into a passion project to help other families, empower us all with information and education, and advocate for all those affected by CHDs. I was part of establishing the Cardiac PFAC in 2017 and am very proud of what we have accomplished to date and what we will continue to push for going forward.

My wife, Darcy, and I have three daughters.  Charlotte was born in 2017, Norah was born in 2019 and Annie, our Heart Warrior, was born in Children’s Mercy in 2023.  Charlotte and Norah love dance, gymnastics, soccer and basketball.  Annie loves music and playing with her older sisters.  The three of them are inseparable and truly love being around each other more than anything.  We love spending any time we can with each other.  Whether it’s a dance recital, soccer tournament or just having a dance party in the living room.  We love cheering on the Chiefs and Royals, going to the Zoo, plays and the park.

Our youngest daughter, Annie, was diagnosed prenatally with Hypoplastic Left Heart Syndrome during the second trimester.  From that point on, all appointments and check ups went through Children’s Mercy.  She spent her first week of life in the NICU and then a couple of months in the CICU.  After an initial surgery, Dr. Gibson informed us that Annie would need a heart transplant.  While we were devested, Children’s Mercy was right by our side providing support, guidance, and friendship. Annie was born in August of 2023 and released in May of 2024 after receiving her new heart.  She has returned for checkups, labs, catheterizations, and a few unexpected visits to recover from other illnesses.

The heart journey can be overwhelming.  I wanted to be able to help others going through a similar experience by collaborating with Children’s Mercy to make sure parents are getting the best care and support possible.  I feel so grateful to be a part of a hospital that truly puts families first and values their input.

My wife Savanna and I have been married since November of 2005 and have called the KC metro home since 2014. We have two children: our oldest, Maizie, was born in 2016 and is our empath while our youngest, Emery, is our heart warrior born in 2020 and is every bit a fighter. We spend our time together exploring the outdoors, riding the area trails on our bicycles, searching for new ice cream shops, and generally making the most out of the seasonality of the Midwest.

At Savanna’s 20-week checkup it was discovered that baby #2 had Double Outlet Right Ventricle with abnormal mitral valve anatomy. The fetal care team at CMH helped us throughout the remainder of the pregnancy, and after a stint in NICU after birth, Emery was followed by CHAMP throughout her first 14 months of life. She has undergone a series of staged bi-ventricle repair surgeries at Boston Children’s Hospital and is currently under the care of Dr. Kaine here at CMH.

Throughout this journey as the parent of a heart warrior, I have held in my mind the idea of just how important it is to help families in similar circumstances not only with understanding the resources available to them, but also how to help shape their expectations in a world completely foreign to most of us who find ourselves here.

We have an active, some might say rambunctious, family! My husband Nathan and I have three adorable children Zane is 12, Zoie is 10, and Zali is 9. Zoie is our heart kiddo. She is a big-hearted, energetic young lady that has such empathy for anyone in distress. She often forgets about boundaries as she peers in carriers of crying babies and she’s always first on the scene if someone is hurt.   We enjoy church events, sports, family hikes, summer days at the lake and visiting friends and relatives. We try to find moments to make memories whenever we can and we are truly grateful for our three blessings.

We found out in utero that Zoie had heart complications. She was the 30th child to be born at Children’s Mercy in the Fetal Health Center. They took great care of her and she received her first heart surgery at 3 weeks old. She has since had 3 more surgeries and is followed by a variety of clinics. Children’s Mercy has provided us with outstanding care and guidance through the years. We are so thankful to have this topnotch hospital in our city.

I became a Cardiac PFAC member because I wanted to do something to give back to Children’s Mercy as they are the reason my daughter is here with us today. I wanted to be a voice for patients and their families and shine light on our perspective. Plus, I wanted to be part of this wonderful group that is working hard to make any improvements they can to streamline processes and make patients and their families as equipped as possible to face their journeys.

My husband, Andy, and I have been married since September 2007. We have two children. Avery, 10-year-old, is the sweetest, caring and loving and always willing to help. She takes pride in everything she does and loves to play with her little sister. Macie, 2 years old, is our heart warrior children and is the strongest little girl you will every meet. She always is surprising us with something new that she accomplishes everyday. She never gives up on exceeding her milestones with her beautiful smiling. Family time is very important to all of us. We enjoy biking, being outdoors, playing games, watching movies and visiting the mountains when we have the opportunity. We try to spend as much time with our family and friends. We realize that laughing and smiling everyday is so important to our family bond.

Macie was born in the Fetal Health Clinic within Children’s Mercy and was transferred immediately after birth to the NICU unit. She spent three days there and then was transferred to the PICU unit and spend the next five months in the PICU unit. She underwent two open heart surgeries, the Norwood at 8 days old, and the Glen, at 4 months old. She is currently followed by two specialists along with the cardiology clinic at Children’s Mercy.

It is super important to advocate for Macie everyday. I wanted to have a voice and have involvement in improving the care and hospital experience for other families and their loved ones. When the recommendation from another heart baby’s mom came to my attention, I joined the Cardiac PFAC to make that difference happen.

My husband, Scott, and I welcomed twins, William and Kameron, in December of 2019. Despite all of the prenatal care I received, our boys had undiagnosed critical congenital heart defects, which became evident on day 5 and 6 after birth. Both of our boys were transferred to Children’s Mercy, where they spent five months staying in the NICU, PICU and 4S towers. William was diagnosed with Interrupted Aortic Arch, a large VSD, ASD, Bicuspid Aortic Valve, and SVT. He had one open heart surgery to fix the IAA, VSD and ASD. William also required a G-Tube to help with nutrition and growth. William was discharged from Children’s Mercy in April of 2019, while his brother remained in Children’s Mercy. William had the sweetest smile and personality. His sweet spirit was contagious, and one couldn’t help but love him. Unfortunately, William passed away on May 13, 2019, from his CHDs. Kameron’s defects were similar, in that he was diagnosed with Coarctation of the Aorta, large VSD, Bicuspid Aortic Valve and PFO and first-degree heart block. Kameron was more complicated and has had multiple surgeries to repair his CHDs. Kameron also had feeding difficulties and required having a G-Tube placed to help with nutrition and growth. Kameron continues to be followed in the Heart Center and is doing great! We talk about and incorporate William in our everyday lives and are so thankful for the time we were allowed to have with him. The world of CHD is not something we ever expected or could have predicted to be thrust into, but we take it one day at a time, and stand in awe of the two Heart Warriors we have been given!  Right now, Kameron is interested in animals, particularly lions, as well as anything sports related. We spend a lot of time kicking and throwing balls, growling like a lion, reading and just being together.

The one-of-a-kind care we received while our boys were inpatient, and the follow up care Kameron continues to receive, is phenomenal. From his surgeons, doctor, nurses, care assistants and volunteers, it is evident they care deeply about the children and families they serve. They have celebrated every victory with us, and cried with us when we lost our precious William. Anytime we have a question or concern, we are heard. Kameron’s providers are accessible, and always willing to go above and beyond to make sure Kameron has the best care possible. Truly, I cannot say enough wonderful things about Children’s Mercy.

Children’s Mercy is such an amazing place, and the Cardiology Department has become a second family to us. I wanted to be a part of continuing to help make this department and hospital a phenomenal place to receive the care and answers families are seeking for their child(ren).

My wife's name is Amanda and we have two boys, Mason age 6 and Theodore age 3.  We also have two dogs Moose and Molson that are there to shed hair and mess all over our home. The boys are a lot of work, but as anyone with kids knows they are the main event in any situation. My wife is originally from Canada and moved here when she was a teenager. We have a lot of fun together and do all we can to get the boys outside.  Theo since his surgery has been getting stronger and better with everyday. We love being able to see him come into his own and learn about his body and why he is special.  Our oldest loves riding his bike at any dirt-bike track. So of course, Theo loves taking his balance bike out to the track to follow in the foot-steps of his older brother.  We also enjoy going on trips to the local park and letting the boys get all their energy out while they can.  It’s fun taking the family out for road trips to states surrounding ours as it's not too far and you get to see some really cool locations. We have been to Colorado and Arkansas multiple times as those are great destinations for any family. We also enjoy going out to eat when we can now that the boys are getting older and capable of sitting and behaving in public is manageable.  Regardless doing anything with them, whether building with magnatiles or making a cool Hot-Wheels track is fun because we are doing it together.  To any parent, take advantage of any time you have with your family because as Ferris Bueller once said, "If you don't stop and look around, you might miss it."

My youngest son Theodore was diagnosed with hypo-plastic left heart syndrome right after he was born, and it was a very difficult time for our family. We were brought to CM immediately and from the start knew we would be in the best of care. Right away the doctors started running tests and looking at the data to understand what we would be doing next.  While we were scared and nervous at the time, we found relief in how professional the nurses and doctors were when it came to the care for our boy. I was really impressed with the meetings we would have with the cardiology team and how they would breakdown very complicated medical terms so that we could better understand the process. They would answer our questions and made sure that we were a part of the decision-making process throughout.  Post-surgery and after release we got to meet the Champ team and that only solidified our appreciation for what CMH brought for our youngest. Even after we were gone it felt like we had all the support and care we would need for Theo.  I still remember documenting everything in the app and knowing that the more we did the better the information the champ team would have to confirm that we were on a good path. From the start to the end it was a fantastic process and appeared that they had already thought of everything we might need.

To better help and assist other families going through similar stressful situations, I wanted to be there to help in any capacity. I love what this group has accomplished already for these brave families, and I appreciate the opportunity to carry on that tradition. Children's Mercy is doing a great thing by having the PFAC group be an integral part for their cardiac patients.  

I live with my husband, Jonathan, in Hays, Kan. He is a police officer and I currently work part-time as interim director of the local historical society. We have a Heart Healthy son, Ivan and Amelia is our Heart Warrior. Ivan is an advocate for his sister almost more than I am at times. Our family and community have been huge supports.  Besides school, work and the occasional rec. activity we are homebodies. Our days are spent making crafts, playing games and watching kid shows. Typical “living the dream” adult life. Amelia is in gymnastics and Ivan enjoys soccer and basketball. Most family trips revolve around traveling to KC for follow-up appointments, but we make the most of it.

We did not know of any CHD prior to birth. Born in July of 2017, Amelia spent almost the first entire year at CM (a 6+ month straight PICU stay included). During that time she had a Gtube placed, 3 open heart surgeries and one stent on ECMO. She now has a mechanical mitral valve. She had a 4th OHS in April 2021 and will have a couple more by adulthood. Her original diagnosis is AVSD or AV Canal but has been the extreme case at every turn. Dr. Douglas has performed all of Amelia’s 4 OHS and we absolutely love him. His bedside manner is exceptional. It wasn’t until his first explanation of the first OHS that I truly understood Amelia’s anatomy and defect. Amelia’s cardiologist is Dr. Natalie Jayaram, whom we are so thankful for! Dr. Jayaram goes above and beyond any other doctor or specialist we have had experience with. Absolute caring is her way and she values my concerns in every situation.

My husband and I were very involved with care during my daughters almost one-year inpatient time, staying bedside day and night. Since we have been home, I find myself reaching out to heart families in my own community, especially parents new to the heart warrior world, offering advice and a peer connection so far away from the specialties of the hospital. It is rewarding for me personally to find ways to be involved, share and help improve our experiences when so much of this life feels uncontrollable.

My husband, Shad, and I have been married since 2011 and live about 2 hours from Kansas City. We have two sons – Jace, born in 2014, and Colby, born in 2017. They are a rambunctious pair and keep us on the go with their school and sport activities. Colby is our Heart Warrior and received a heart transplant in 2018.

Our first trip to Children’s Mercy in September 2017 was not planned. But from the emergency flight with CM Transport team, our short time in the NICU to our 6+ month stay in the PICU, we always felt supported, informed and that Colby was receiving the absolute best care around. We were also admitted a few times about a year post transplant as well as multiple heart cath procedures through the years. For these reasons and regular visits with Cardiology, Colby refers to Children’s as ‘My Hospital.’

After our experience with Children’s Mercy in 2017-2018, I knew I wanted to find a way to give back. I hope that I’m able to take my experience, combined with other parents who share similar stories, and create resources or solutions that can be helpful to parents who might feel lost following a cardiac diagnosis for their child.

My husband, Dustin, and I were high school sweethearts and have been married for 17+ years. We have 2 heart warriors, daughters Ashlyn and Haevyn. Through genetic testing, we learned that the type of cardiomyopathy Haevyn was diagnosed with was familial, therefore, we also learned Ashlyn also has cardiomyopathy, but we were able to catch it in enough time to treat with medication. Ashlyn also has Turner Syndrome, another condition we were able to have diagnosed by Children’s Mercy. We also have a fur pup named, River a German Shorthair Pointer, who loves hunting with Dustin.   As a family we love to travel and spend time with relatives!

Our lives were changed in the blink of an eye, when our youngest daughter, Haevyn, went into heart failure at 4 months old and later diagnosed with dilated cardiomyopathy leading to a heart transplant. When our local doctor met us in the ER and said we were being transported to Children’s Mercy in Kansas City, I instantly knew the situation was dire because I knew Children’s Mercy was where kids in our region go when things are serious. Once we arrived in the ICU by Life Star, all the nurses, physicians, surgeons and therapists made sure we were informed of all procedures and understood the challenges ahead whether good or bad. Dustin and I respect, trust and are truly thankful for the outstanding care our girls receive from many of the specialties offered at Children’s Mercy. Because of the expertise and amazing care, she received at Children’s Mercy, she is now a thriving and spunky.

It’s important for me to give back in some way. I learned of the PFAC through their newsletter and thought this could be a way to share knowledge and experiences we’ve received as a family through all our complex medical struggles. I want other families in similar situations to know they aren’t alone. Being a part of continuing to evolve the Heart Center and the type of care future heart families receive is something I am passionate about.

My husband Kyle and I got married in 2018. I am an adult nurse here in Kansas City and he owns his own contracting business. We have two children, Jay was born in 2020 and Mia was born in 2025. Jay was born with D- Transposition of the Great Arteries with a Ventricular Septal Defect. Mia has a PFO, and my husband Kyle also has a PFO that required a closure device after having two strokes in 2021 at the age of 28. We love spending time outside with our dogs, cooking/baking, and playing baseball. We are big sports fans, and frequent baseball, hockey, and football games. We have lived in Kansas City since 2014 and love giving back to our local community at any opportunity.   Together we enjoy hanging out with our dogs, traveling, attending sports events, hiking/kayaking, and spending time with our families. 

I completed a Capstone in nursing school on an inpatient unit at CMH and worked in a CMH outpatient clinic prior to the start of COVID. I left my clinic position a month before Jay was born but I wasn’t gone very long. The day after Jay was born, he was flown to CMH’s NICU and taken into the cath lab. A week later he had open heart surgery to correct his TGA. The cardiothoracic surgical team was amazing. Dr. Douglas and Dr. Gibson were great at explaining the procedure to us and made us feel as comfortable as possible with the process. Unfortunately, Jay developed chylothorax following surgery which delayed his healing time and impaired his ability to eat. The lactation team was helpful in teaching us how to skim milk to keep him on breastmilk while he healed from chylothorax and so we could go home. Jay is still seen by specialists at CMH and all have been happy to educate us and listen to our concerns about taking care of Jay. 

When our son was born, we spent a month inpatient at CMH. We know our hospital stay would have been much more difficult for us as a family if I hadn’t been a cardiac nurse myself. When I found out about the PFAC I wanted to join to help bridge the gap between the Care Team and the family. 

My husband, Adam, and I got married in 2016. We had our first son, Gordon, born with HLHS, in 2017. Our daughter, Jocelyn, was born in 2019. Rudy was born in 2022 with a Bicuspid Aortic Valve, and Myra was born in 2025. Both girls are heart-healthy. We live in a small town in northwest Missouri. Adam works in ag retail and has a cattle/row crop farming operation with his brother and dad. I run an in-home daycare, and greatly enjoy being as involved as possible in our kids’ activities. We also have three dogs at home!  We enjoy spending as much time outdoors as possible, and especially love being with our families and friends. We find great pleasure in using our camper any chance we get, and we’re avid baseball fans; we frequent Royals games and St. Joe Mustangs games. 

Due to Gordon's diagnosis of HLHS in-utero, he was delivered at Children's Mercy, and spent his first 3.5 months of life there before getting to go home for the first time. He has returned numerous times for various catheterizations and inpatient stays, has been followed by multiple clinics, and has had three open heart surgeries in total. Because of Gordon’s diagnosis, all three other children were evaluated prenatally and after birth as well. 

Children’s Mercy gave our son the chance to live when he wouldn’t have been able to otherwise. I don’t believe we can ever properly thank this hospital or his care team for what they’ve given us. Volunteering is one small way to feel like I am giving back to an organization to whom we owe everything. Through both the PFAC and the POPS program, I hope to be able to support other parents in learning the importance of advocating for themselves and their children. I’m grateful for the opportunity to voice families’ needs directly to hospital staff to help improve the care provided - whether that is within the clinic and/or hospital setting, or finding additional resources to assist all family members affected by CHD.