Fetal Health Center PFAC members

My name is Taylor Burris and I have had the pleasure of joining the PFAC team in 2022. In the early stages of pregnancy my child was diagnosed with spina bifida and hydrocephalus in utero and thanks to the amazing fetal health doctors and nurses, my daughter was successfully operated on in utero and born at Children's Mercy Hospital. 
As business owners and parents, my partner James and I have been on an amazing journey with our daughter and we have become passionate about raising awareness and support for other families who have children with spinal differences. I desire to continue to help elevate care, expectations and overall experience for families along their journey. 

As a working mother, I am also passionate about giving back to my community.  I am honored to be a part of a couple Patient and Family Advisory Committees at Children's Mercy, sharing my experience from when both my son and I were patients there.  Some of the hardest moments of our lives occurred during my pregnancy and postpartum while my son battled a life-threatening birth defect for many months in the NICU.  He continues to be followed by multiple specialists and we've had subsequent hospital stays related to illness and follow-up procedures (some planned, some emergent).  It's imperative to me that all patients and families feel supported during their journey and we do our best to pay it forward.

My journey began with Children’s Mercy when my son was diagnosed in utero with an intestinal atresia and was delivered in the fetal health department in October of 2020. He spent a little over three months in the NICU and had several surgeries and procedures during that time. The team was also able to diagnose a rare liver condition called biliary atresia that would lead to a liver transplant. During the last two years the care and support we have received from the nurses, child life and the multiple specialties we see have been more than we could ask for.

Due to the compassion Children’s Mercy has shown my family we have been inspired to give back. I joined the Fetal Health PFAC as a Co-Chair to help other expecting mothers navigate fetal diagnosis and support their journey through a medical pregnancy. I also sit on the rare PFAC and volunteer at the Kramer Resource center at Adele Hall to help other families going through the same situation my family has. My 9 year old daughter; Zaina has been the best big sister to her brother and has been inspired to join junior volunteers to support other siblings and children touched by Children’s Mercy.  

I found out my son Leo had an unknown genetic disorder when I was 15 weeks
pregnant, when I was referred to the Fetal Health Center. Through three admissions and several appointments, I got to know the wonderful staff and doctors there. At 36 weeks, Leo was born and went directly from the Fetal Health Center to the CMH NICU where he spent 5 perfect days with his family before passing away. I joined the PFAC to help support and comfort others who may have similar circumstances. 

I am a wife to Travis and Mama to Colton (12) and Liam (1). I offer the perspective of
having spent most of my pregnancy as a patient in the FHC alongside the experience of my child also being a patient. Because of this experience, I am also a member of the NICU PFAC. My goal is to help educate on this unique experience of being a patient as well as parent to a patient.

My husband, Andre and I welcomed our son, Logan during the middle of a pandemic at 36 weeks. At 22 weeks, Logan was diagnosed with Spina Bifida, myelomeningocele, the most severe form. Along with Hydrocephalus and Chiari Malformation. At 25 weeks we had in-utero surgery to repair the opening in his back. After he was born, he had another repair surgery and remained in the NICU for two weeks. Few years have gone by, and he has had other surgeries such as a shunt placement (5mo) and multiple feet surgeries, with a few more surgeries in the near future. Given these complex diagnoses, we are extremely grateful for all the resources and care that Childrens Mercy has provided for our family.

I became a member of the Fetal Health Center PFAC to have an impact on future families that may be starting to walk the same journey we went through. I know first-hand the emotional rollercoaster a fetal diagnosis can be and all that comes along with it throughout the pregnancy and beyond. My hope is to give back, and advocate for the fetal health center, along with Childrens Mercy for all they have done. To provide insight, support, guidance, and a shoulder to cry on for families that may be going through the hardest time of their life. There is hope and Childrens Mercy led the way.

My husband Casey and I are the parents of four incredible boys. Halfway through our pregnancy with our third son Hudson, our sweet boy was given a prenatal life limiting diagnosis of Trisomy 18. He was born full term and lived for two beautiful days in the loving arms of our family and the wonderful staff at Children's Mercy. 

We are eternally grateful for the care and support Hudson and our family have received during our experience with Children's Mercy. I am honored to be given the opportunity to serve on the Family Advisory Board and to walk alongside other families in their unique journeys at the Fetal Health Care Center. 

My journey at Children’s Mercy began with the Fetal Health Center when I was pregnant with Will, my 3rd child and first son.  Patrick, my husband, and I found out at our 20 week sonogram Will had a rare variation of a critical congenital heart defect.  Throughout my pregnancy, Will’s heart led the way and his path was ultimately comfort care.  Will was born at Children’s Mercy, lived for 4 days being loved on by us and his sisters: Emory and Rosie, before we said goodbye.

Our lives were touched by the many nurses, doctors and staff at Children’s Mercy who made a profound impact on us during a difficult time.  Having the opportunity to start the Fetal Health Center PFAC, give back to Children’s Mercy and help other families who face unimaginable situations has been a meaningful way to honor our Will.  

My husband Robb and I welcomed identical twin boys – Luke and Matthew – in June 2020.  I was diagnosed with twin-to-twin syndrome and was recommended to the Fetal Care Center at Children’s Mercy.  Within 3 days of our initial consultation, the medical team performed in-womb surgery at 15 weeks.  I continued to be monitored at Children’s Mercy throughout the duration of my pregnancy.  Due to complications, I was admitted to the Fetal Care in patient care rooms for bed rest and constant monitoring for almost 2 months leading up to the twins’ birth.   The twins were born at Children’s Mercy within their Special Care Delivery Service and admitted to the NICU for almost 2 months.  Matt continues to be monitored at Children’s Mercy for a heart defect.

Without Children’s Mercy, we would not have 2 happy and healthy boys!  Our sincere appreciation for the knowledge, care, and support that were provided directly to me and my family!  I am honored to be a member of the PFAC and provided the opportunity to assist families, patients, and the wonderful care team at Children’s Mercy. 

My name is Shelby. My daughter was diagnosed prenatally with Hypoplastic Left Heart Syndrome, which is why I received my prenatal care and delivered at CMH. She has had two open heart surgeries at CMH and will have a third. We have seen numerous specialty clinics at CMH, and are so thankful for the wonderful care our daughter has received. She is alive because of CMH. I was honored to join the Fetal Health Center PFAC, and pass on what I’ve learned and experienced to help families as they begin their journey at CMH. No one is alone, and I want families to feel supported and are cared for, just as we did, and still do.