NICU PFAC Members

Barb Carr

Hi! I'm Barb Carr and I'm proud to be a member of the NICU PFAC. I was introduced to the NICU during a visit to the Fetal Health Center after my son was diagnosed at 20 weeks gestation with a Congenital Diaphragmatic Hernia.

I joined the NICU PFAC because I want families to know they have support. Even when the days are difficult, there are resources available to help through each step of the journey. It may feel like you take two steps forward and then one step back, but when you look at the big picture you can always see the progress made over time. Our son went from being one of the sickest babies in the NICU to a growing boy without any respiratory support equipment, and we could not have done it without the support of the team in the NICU. As parents, we learned so much from the NICU support community and we want to help pay that forward for other families.

Child’s Name: Benji
Length of stay: 10 weeks
Diagnosis: Congenital Diaphragmatic Hernia (CDH), hypoplasia of left lung, cardiac & pulmonary failure, pulmonary hypertension, hiatal hernia, plagiocephaly

Kallie Kirk

Hi! I’m Kallie Kirk. Our son Klein Kirk was born full term and perfectly healthy (or so we thought), and discharged at 2 days old. Fast forward less than 24hrs later and he would be re-admitted to the hospital PICU for desatting everytime he would eat while also discovering he was having subclinical seizures. We were then transferred to CMH ICN when he was 6 days old were he was diagnosed with an extreme case of Laryngomalacia requiring a life saving surgery called a Supraglottoplasty to open his airway. They got his seizures under control with medicine and started genetic testing. He was then discharged from CMH at 20 days old. A couple of weeks later we got a call from genetics that his subclinical seizures are from a 20q13.33 micro deletion syndrome. He has always thrived and continues to do so especially being the baby of the family.

CMH was an amazing place that being a part of the PFAC is such an honor. The NICU was the hardest thing we have ever endured while going through every emotion possible during that time. I love to be able to help parents navigate and know they are not alone. This is my why and reason for giving back. I want to help make a difference for parents and families navigating the uncertainties in those times.

Child’s name: Klein
Length of stay: 2 weeks
Diagnosis: Extreme Laryngomalacia and 20q13.33 micro deletion

Erika Mendence

While in-patient, I was amazed by the strength, generosity, and community we found in many aspects of our NICU life. We met amazing parents, nurses, doctors, and hospital staff (including the folks who work at The Roasterie!)! I work with the NICU PFAC to help NICU families navigate this experience in hopes of alleviating some of the emotional pain and highlighting the beauty that can be found despite the trauma.

Child’s Name: Birdie
Length of stay: 6.5 months
Diagnosis: Omphalocele, VSD, bronchomalacia

Jim Pryde

Hello! My name is Jim Pryde. I joined the NICU PFAC in gratitude for the overwhelming support, care, and love I received from everyone at Children's Mercy during Ian's NICU stay. I have always wanted to find a way to give back to the organization that did so much for us. An inpatient NICU stay is stressful and overwhelming, and parents who have gone through it before can do so much to provide comfort for those who are experiencing it for the first time. Parents like me have a story to tell, and the NICU PFAC gives me the opportunity to share my experiences and make a difference for those families.

Child’s name: Ian
Length of stay: 38 days
Diagnosis: Respiratory Distress Syndrome, Intestinal issues, concern for Necrotizing Enterocolitis

Mom, Brianna in navy blue dress sitting on the edge of a bed holding her two newborn babies. One baby in cream onesie and onw baby in grey onesie.

Brianna Schmitz

Hey! I'm Brianna. After a difficult road to conceiving, we were elated to have our one and only IVF embryo split into identical twins! Twin A (Bodhi) started having complications at 16 weeks gestation. Thanks to the wonderful team at St. Lukes Plaza KC, with consults from Children's Cincinnati and Children's KC, we were able to come up with a plan that got us to 28+3 before delivering 2 perfect boys in December of 2023. Both boys had a long stay (majority of it at CMH) and the love, support, stories, and staff quickly became my lifeline as I left my job as a special education teacher to be there for 10+ hours a day after delivery. I joined the PAFC to help give back to those very people and helped others in similar situations.

Child's Name: Bodhi
Length of stay: 125 days
Diagnosis: SIUGR, perforation, hernias, hypospadias. (Relatively "healthy" and "easy" NICU stay).

Child's Name: Briggs
Length of stay: 141 days
Diagnosis: code event on day 2 of life causing- pulmonary hypertension, pulmonary hemorrhage x3, multi organ failure (now resolved mostly), NEC (stoma, mucous fistula later closed), PDA closure, pulmonary valve stenosis (Ballon procedure), grade 3 brain bleeds- reservoir and then shunt placement, ROP (injections and laser surgery), deaf (cochlear implants at 10 months adjusted), hernia repair (1 year adjusted).

Aisha Walker

Hello, I’m Aisha Walker, and I was introduced to the NICU journey through my experience at Children’s Mercy’s Elizabeth J. Ferrell Fetal Health Center, where my son, Wisdom, was born at 31 weeks. After a complex and challenging pregnancy marked by unexpected complications, my care team, family, and faith carried us through each twist. At 32 weeks, my water broke, and after three weeks of early labor and careful monitoring, Wisdom was delivered via an emergency C-section. Born at just 4 pounds, he faced a list of possible health challenges, but with the expert and compassionate care of the NICU team, he overcame the most pressing of these, allowing us to bring him home to his two big brothers after three weeks in the NICU. Our family’s journey taught us resilience, faith, and the importance of compassionate support, which drives my commitment to the NICU community. I want families to know they’re not alone and that there is hope even in the hardest moments.

Child’s Name: Wisdom
Length of Stay: 3 weeks
Diagnosis: Premature birth, cleft lip and palate

Lauren Ward

Hello, my name is Lauren Ward. Our son Brooks was born early at 28 weeks here in Springfield, MO and after a month here we were transferred to CM for the next 8 months. Brooks has the diagnosis of tracheomalacia and a rare overgrowth syndrome, called Cantu Syndrome. Our sweet boy has a trach, vent, and g-button. Our experience at CM was truly life changing, obviously for circumstances with our son but overall how loved and cared for my family felt by the staff. Our nurses, doctors, PT/OT, and many more were absolutely outstanding and such a big part of our story with Brooks.

My hope in joining the PFAC team is that I can make a difference in helping and caring for those going through challenging times in the NICU. The CM NICU will forever have a big piece of our hearts, so I am so thankful for this opportunity to help support CM NICU families anyway that I can!

Childs Name: Brooks
Length of stay: 8 months
Diagnosis: Tracheomalacia, Cantu Syndrome