NICU PFAC Members

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

Our son Archer was cared for in the NICU for the first month of his life (in the midst of a global pandemic) in March/April of 2020 by the most compassionate nurses, kind and informative OT/PT, and extraordinary doctors. Archer conquered several huge hurdles, in spite of several setbacks, to meet his team's goals for feeding and growth. 

I'm thrilled to be a part of the NICU PFAC so that I can support other families that are on their NICU journey. Because we were in the NICU at the very beginning of the pandemic, many of the supports that are usually in place had been discontinued due to safety concerns about Covid. I want to make sure that every family feels heard, supported, and empowered to advocate for their NICU warriors. 

Child’s Name: Archer
Length of stay: 1 month
Diagnosis: cleft lip & palate

Our journey began at CMH after Sage was diagnosed at 20 weeks gestation with a genetic syndrome. We were seen in the Fetal Health Clinic and then transferred to CMH a few days after birth. She spent a little over 3 months in the NICU while we figured out her breathing, eating and got our specialists all lined up. I'd say the biggest reason I wanted to join the PFAC is to stay connected to something that was such a big part of our lives and to help shape the experiences for the families coming through the NICU in the future.

Child’s Name: Sage
Length of NICU stay: 101 days
Diagnosis: Cornelia de Lange syndrome

My daughter was transferred to CMH at 10 days old and spent 8 months in the NICU. Looking back at our NICU journey, I still can't believe we were in the hospital for so long. We met so many doctors, so many nurses, so many specialists. It was just the beginning of our new journey with a child with special needs. I choose to volunteer with the NICU PFAC so that I can help other families during their NICU stay and to make sure our story and our NICU stay can hopefully impact families in a positive way. I love being a part of and still feeling included in the NICU family. 

Child’s Name:  Haylee 
Length of stay:  8 months 
Diagnoses:  RYR-1 aka Central Core Disease, a genetic congenital myopathy, gtube dependent, dysautonomia, hypoxic brain injury, restrictive lung disease, wheelchair dependent 

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

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

I am Jessie Underwood and my youngest child, Dierks, was transferred from St. Luke’s to Children's Mercy at one day old. After a few unexplained issues at birth, a scan revealed a massive brain bleed. Our time at CMH NICU was the scariest of our lives. Yet I look back at that time fondly because of the amazing care we received and outcome of our healthy son. I want to help other parents who are in similar situations to have hope and small comforts during their time in the NICU. I believe serving as an advocate for parents will in turn help their children, and Children's Mercy as a whole.

Child’s Name: Dierks
Length of Stay: 88 days in Fall of 2018
Diagnosis: Grade 4 brain bleed

Hi! My name is Lorna Walker. My husband Tim and I have twin boys, Reid and Preston, who are 11 years old. They were born at 34 weeks via emergency C-section. Reid was in the NICU for 5 weeks and Preston was in the NICU for 3 months. 

I joined the NICU PFAC because I want to give the kind of support we desperately needed when our boys were both in the NICU. I never want any family to feel alone. I want to help give necessary resources available and do anything I can to ease the stress being in the NICU brings! I want to share our personal NICU experiences to provide comfort and support to the families who are walking in the same shoes we have worn. 

Children’s Names: Reid and Preston
Length of stay: 5 weeks (Reid) and 12 weeks (Preston)
Diagnosis: Failure to Thrive (Preston)