Seventh Annual Summit - February 11, 2021
Virtual Meeting

The meeting was held in conjunction with the Texas Collaborative for Healthy Mothers and Babies.

Meeting Preliminaries
Dorothy Mandell, PhD, Texas Collaborative for Healthy Mothers and Babies (TCHMB), reviewed Zoom participation tips, continuing education, speaker conflict of interest, and other housekeeping business. Alice Gong, MD, UT Health San Antonio, thanked Dr. Mandell and TCHMB for exemplary assistance with meeting arrangements and for their on-going support.

Welcome
Dr. Gong welcomed the 102 meeting participants to the seventh annual Neonatal Evaluation and Outcomes Network (NEON) Summit and gave a brief presentation about NEON, a voluntary regional (Texas, Oklahoma) working group collaborating to ensure all NICU survivors maximize their potential.

Dr. Gong reviewed the summit agenda and introduced the first session.

Early Cerebral Palsy (CP) Diagnosis, Status, and Management
In advance of the summit, NEON member developmental follow-up programs were invited to give brief reports based on a common set of prompts in a PowerPoint slide template:

• Site target population
• Developmental assessments and when
• Path or protocol for early CP diagnosis
• Training your site has completed with regard to GMA and HINE
• How diagnosis is conveyed to parents
• Challenges and management during the pandemic
• Needs identified or barriers to early CP diagnosis

NEON members presented information about their programs in the following order: Leslie-Anne Dietrich, MD/UT Health San Antonio-PREMIEre Program; Mario Fiero, MD and Aaron Espinoza/San Antonio Pediatric Developmental Services; Yvette Johnson, MD/NEST Developmental Follow-up Program, CookChildren’s Hospital/Ft. Worth; and Kristine Tolentino-Plata, MS, THRIVE Program–Children’s Health-Children’s Medical Center Dallas and UT Southwestern Medical Center.

Dr. Gong thanked the presenters and indicated questions will be addressed through Zoom Chat Box. She noted that the information provided informs collection of uniform data. A data collection tool for follow-up programs will be presented later in the meeting.

Tales from the CP Journey:
Parent Perspectives Three mothers of children who are NICU survivors and two adolescents who were in the NICU participated in interviews that were videotaped for presentation at the meeting. Alicia Quim, UTHealth San Antonio-PREMIEre Program, moderated the sessions posing a set of questions for parents and patients.

Questions for the Parents:

1. Tell us about your child, how premature was she/he? Please describe your experience in the NICU.
2. How old was your child when he/she was diagnosed with CP and how much did you know about the diagnosis at that time?
3. After your child was diagnosed, how soon did your child start receiving therapy and how was your experience with the services provided?
4. Due to COVID-19 pandemic, many therapies are now given using telemedicine, what are the obstacles you have encountered with this new format?
5. How has telemedicine affected the overall developmental progress of your child, if any?

Three parents gave compelling testimonials about their NICU experiences.

Mom 1 described having a normal vaginal delivery but as soon as her son was born, he was floppy and purple in color. He experienced severe HIE and spent 57 days in the NICU. While “the doctors and nurses were phenomenal, the NICU is an unnatural, sterile place with constant beeping noises, cords and wires everywhere. You can’t bond with your baby and it is horrific to leave your baby at the end of each day.” Her son was diagnosed with CP at 11 ½ months, having both dystonia and spasticity with the left side most effected and developmental delay. “It was hard to wrap my mind around a lifelong diagnosis of a disability after everything we had already been through…” After being discharged from the NICU, Mom 1 explained she was so busy with her newborn with special needs, she didn’t have time to think about the home health therapy. The NICU staff set them up with OT, PT, and speech services but “they were terrible. There was no accountability and you don’t know what you don’t know and what questions to ask…I kept pressing them and finally left that home health service and asked for qualified therapists. Now we have the best in the field which has made a huge difference and this was even before the CP diagnosis. Since the diagnosis, because there is common knowledge about CP, it is easier for the medical team to understand.” Obstacles with telemedicine are the technical difficulties with video and “telemedicine is inefficient and a waste of time. It slowed the rate of progress.”

Mom 2 described her pregnancy with twins where at 28 6/7 weeks one of her babies (Baby B) “flatlined,” prompting an emergency c-section. Baby B had an Apgar score of 2-4, weighed 2 lbs. 7 oz, was limp, pale, and needed a blood transfusion. Baby A weighed 2 lbs. 11 oz and was crying. Mom 2 appreciated that “there was a new section in the NICU with lots of attendings taking care of things.” Both babies went to the NICU and were intubated, with Baby B intubated longer. They spent 56 days in the NICU. Mom 2 shared “there were good and bad days. I cried a lot. I was grieving. I am still grieving.” Both babies went home without needing oxygen, they are now seven years old. Regarding CP diagnosis, “I knew they were susceptible to complications…I was told Baby B would likely have delay. With Twin A there were no concerns from the ultrasound…I was overwhelmed leaving the hospital knowing maybe Baby B had CP.” Therapies were initiated at home but only with Baby B. “Easter Seals provided therapy and are on the journey with you in the first three years with OT, speech, and PT. It was great, strong in those three years, with therapists coming to the house once or twice a week. There were problems with staff changes. Six different people came and after age three, we struggled with the insurance. Water therapy was helpful for Baby B’s spasticity. Botox was hard because you must hold down your child and it is painful. Then we went a whole year without PT, only speech therapy. Renewal/reauthorization for services is hard. The school district does assessments but does not provide therapy.” Mom 2 is a strong advocate for more resources for children’s therapies which should not require a struggle to obtain. During the pandemic, resources/services were cut off. Between March-May 2020, there was a pause. When services were provided, it required all parties wear masks, use hand sanitizer, etc. The authorization process was a struggle.

Mom 3 described having a great delivery and going home in two days. Two weeks later, her infant daughter was not eating, and her hand was twitching which turned out to be evidence of seizure. She had 50 seizures in one night. The baby’s oxygen decreased and she was in the NICU where it was determined a virus attacked her brain. MRI showed severe damage. Doctors listed CP as a major expectation, possibly in a wheelchair or mild effects. At three months, ECI therapy was initiated with her daughter. Mom 3 had high praise for ECI. She reported that the ECI therapist noticed signs of possible autism in her older son. The therapist observed her infant daughter feeding and felt she was aspirating her milk. A swallow study was conducted and now her daughter is 100% G-button fed. Without the ECI therapist’s involvement, her daughter’s aspiration with feeding problem could have been fatal. There were insurance problems. They only allowed one therapy per week when two visits were needed. Telemedicine does not work for managing her daughter’s condition. It requires eye gaze for the communication device.

The parents responded to questions about how NICU staff can better prepare families for transition to home and other thoughts. Mom 1 reported that her son had feeding problems and was on an NG tube the entire NICU stay. He was able to get off the NG tube and was discharged but ended up still having feeding problems and was back on the NG tube at home which she was quite able to manage. The hospital policy did not allow discharge with NG tube. Yet, her son ended up on an NG tube at home anyway. She noted that they could have gone home sooner, “No one should be in the NICU that doesn’t have to be there.” Mom 3 stated she did not want to know specifics about her daughter’s condition. She described having a lot of fear and worried every time the baby cried, even though she had experience parenting two other children. It was her mother-in-law who took care of learning about the specifics. Mom 3 stated that the NICU experience was great with the staff attending to all their needs and providing them anticipatory guidance. She would have liked to stay longer and wasn’t ready to go home. As far as the home therapy, because of insurance limitations, they were forced to choose between PT and speech therapy. Her daughter would have been better off if she had also had speech therapy because of the feeding issue. Mom 1 emphatically urged that moving forward, medical care and therapy should be in-person and not virtual. While there may be a few occasions for virtual care because of COVID self-quarantine, it should not be the norm. “How can a speech pathologist see the intricacies of the oral cavity of a wiggly baby from an iPhone? It is just not acceptable care.”

Tales from the CP Journey: Patient Perspectives
Questions for the Patients:

1. What do you know about your birth?
2. Do you remember receiving therapy as a small child? If yes, what do you remember?
3. What do you know about CP? When did you find out you had this diagnosis?
4. Due to COVID-19 pandemic, many services, including school, have switched to virtual settings. What are some of the challenges you have faced?
5. What would you like to say to families that have children with a CP diagnosis?

Twin adolescents explained they were born three months premature. They mentioned vague memories about therapy but mainly growing up in a very positive household where “our parents encouraged us, we participated in sports, soccer, dance.” Not much was made about the CP diagnosis. The twins described themselves as “normal.” They excel in their schooling and are involved in many extracurricular activities. The twins reported that during the pandemic, the main challenge of virtual learning has been trying not to become distracted during online classes. They stressed the importance of having a positive outlook and supportive families and friends in their guidance to other families.

Dr. Gong provided an inspiring perspective about the twins and their medical history. They were born at 27+ weeks, weighing 400 and 600 grams. Their birth was an early delivery because of high risk and complications. Not delivering early meant that one of the twins, the one more compromised, would die. At 500 grams, the smaller, more compromised twin was on three weeks of ventilator support with bronchopulmonary dysplasia. The other twin, at 840 grams, had PVL. Their parents were warned of multiple problems, including CP. In their early years, they had ECI early education. The more compromised twin had speech delay and multiple diagnoses. With a supportive family, ECI, other therapies, excellent health care, and developmental pediatrics, at age 17, he is a success and ranks in the top 5% of his class. His twin sister who also benefitted from the array of supports is also a success and ranks in the top 5% of her class.

Dr. Gong and numerous other meeting participants expressed their profound gratitude to the speakers for their willingness to share their journeys. Among key takeaway messages from the testimonials were: (1) support in NICU and transition home is variable and (2) families must navigate a lot on their own.

Socially Assistive Robotics for Infant and Early Child Development
Dr. Gong introduced Maja J. Matarić, PhD, Chan Soon-Shiong Chair and Distinguished Professor of Computer Science, Neuroscience, and Pediatrics, Viterbi School of Engineering, University of Southern California. She is founding director of the USC Robotics and Autonomous Systems Center and co-director of the USC Robotics Research Lab. Her Interaction Lab's research into socially assistive robotics is aimed at endowing robots with the ability to help people reach their potential through individual assistance (for convalescence, rehabilitation, training, and education) and team cooperation (for habitat monitoring and emergency response). Research details are found at robotics.usc.edu/interaction. (Source: https://viterbi.usc.edu/directory/faculty/ Mataric/Maja)

Dr. Matarić began her presentation by explaining, “A robot is not just a toy but a motivation and reinforcement tool AND a supportive and knowledgeable peer, buddy or coach which has agency; is inherently motivating and rewarding; and has character/personality (some predictability and some surprise). She highlighted research on the use of robots to:

• engage at-risk infants in movement practice, given the critical importance of infant motor development, asking “Can robots get infants to move in a directed fashion?
• drive infant visual attention to directed imitation to drive movement
• understand and shape dyadic interactions of caregivers and infants • assist children with autism spectrum disorders

Dr. Matarić emphasized:

• This work is about developing machines to empower human ability, e.g., to supplement care and support parents. Robots are not intended to replace humans.
• Real world studies and data sets are rare. There is a need for interdisciplinary collaboration and financing of larger studies to advance and make such technologies widely available.

Early Learning and Exploration:
Infant-Robotic Interaction Thubi Kolobe, PT, PhD, FAPTA, Department of Rehabilitation Science, University of Oklahoma HSC was introduced by Patricia Williams, MD, University of Oklahoma Health Science Center. Dr. Kolobe began her presentation by providing a contextual framework for the research in this new field. Her presentation addressed the role of robotic and sensor technology in prevention and early intervention; how infant-robotic interaction can be optimized to promote movement learning in infants with or at risk for CP; and the merits of specific technologies in promoting early learning and exploration in very young infants with or at risk for CP. Dr. Kolobe discussed early developmental screening and surveillance, importance of early mobility, movement learning and skill acquisition, technological innovations, and limitations of the research. Through surveillance, delays can be identified as early as four months of age.

Children with physical challenges of CP can experience challenges in other domains, e.g., learned disuse, neural atrophy. Movement is the gateway to learning and essential to every aspect of health. Infant-robotic research seeks to determine how to help impacted infants move and explore and to foster skill acquisition and plasticity. Teaching must be task-specific, novel, cognitively oriented, incorporate feedback, maximize limit of performance, be high in repetition, and use reward and error-based learning. This can be accomplished through machine learning, using robotic and sensor technologies. A research question is: can infants age four months use technology to learn a new motor skill? Dr. Kolobe and colleagues chose to study how to improve affected infants’ prone locomotion skills. They developed the Self-Initiated Prone Progression Crawler (SIPPC). Dr. Kolobe used several videos to demonstrate infants using the SIPPC. Results indicate infants develop proficiency in goal-directed locomotion using SIPPC. In contrast, there is increase in developmental delay in infants who have not had SIPPC training.

Key points: movement is essential and the gateway to learning; if there is no reach, there is no prone locomotion; there are links between movement and social emotional development, between movement and cognition and problem-solving.

International Guidelines for Early CP Diagnosis and Follow-up
Yvette Johnson, MD/NEST Developmental Follow-up Program, Cook Children’s Hospital/Ft. Worth, Leslie-Anne Dietrich, MD/UT Health San Antonio-PREMIEre Program, and Kristine Tolentino-Plata, MS, THRIVE Program–Children’s Health-Children’s Medical Center Dallas and UT Southwestern Medical Center co-presented a review of the journal article, “State of the Evidence Traffic Lights 2019: Systematic Review of Interventions for Preventing and Treating Children with Cerebral Palsy” by Novak I, Morgan C, Fahey M, et al., in Current Neurology and Neuroscience Reports 2020; 20:1-21.

Dr. Johnson began the session with an interactive poll of meeting participants asking which therapies are recommended for patients with CP or other motor impairments (seven options). She noted that the objective of the presentation was to systematically describe the best current, available evidence for CP intervention and the GRADE and Evidence Alert Traffic Light System for rating quality of evidence and strength of recommendations. The journal article is an update from the international guidelines published in 2013. Dr. Johnson described the study design, using systematic review, and search strategy, March-July 2019. Dr. Dietrich reported that 247 articles were reviewed, examining themes of antenatal prevention, neonatal prevention, and motor interventions. Ms. Tolentino-Plata reported the evidence of early intervention, indicated it is possible to diagnose CP as early as three-months corrected age. Dr. Johnson summarized the guide to interpreting guidelines and the need to manage expectations of families regarding randomized controlled trials results and their own children’s outcomes. She reviewed key points of using guidelines:

• Define intervention goals with child and family
• Match goals to outcome indicator, evaluate options and best evidence
• Select intervention with highest level of evidence, and counsel family regarding average response (may vary for their child)
• Monitor effects and goals attained
• Intervention ineffective, unavailable, family declines, then select 2nd most effective intervention
• Overall, develop plan that best matches child’s capabilities and optimize inclusion

Dr. Johnson emphasized that the guidelines are dynamic and require refining and tailoring. She reported that she would circulate updates from 2020 as soon as they become available. The session ended with a second interactive poll asking participants which therapies they would use for patients with CP or other motor impairments (six options).

Next Steps and Wrap Up
Dr. Gong welcomed participants new to attending NEON summits. She stated that the Executive Committee meets every other month. Anyone interested in joining is welcomed. She reported that NEON has hoped to collect standardized data on NICU survivor developmental follow-up since its early days. Early CP identification and treatment has become the focus for a quality improvement project. Dr. Gong explained that she reached out to Nathalie Maitre, MD, PhD, Director, NICU Follow-Up Clinic, Nationwide Children’s, Columbus, Ohio, who shared a CP data collection tool. Dr. Gong reported that she and Dr. Dorothy Mandell adapted the tool to draft a user-friendly survey that NEON follow-up programs might be willing to use for standardized data collection and reporting.

Dr. Gong presented a proposal for NEON follow-up programs involving monthly data submission by sites through the REDcap database on the TCHMB portal. TCHMB will report de-identified aggregate data to sites quarterly. Sites can make comparisons of key metrics of their data over time as well as compare data with other sites. Dr. Gong reviewed data items proposed for the NEON survey. Dr. Johnson commented that standardized definitions are needed when the survey is implemented to assure quality data. She offered to share the data dictionary developed by the Children’s Hospitals Neonatal Database (CHND).

Participants discussed data use agreements which will be between each clinic and TCHMB. The project is for quality improvement, not research. There were questions about data collection timeframe, enrolling in REDcap, data reporting by city location rather than hospital location, data by zip code, and other issues. Dr. Mandell explained that each site will have access to REDcap for data entry and be able to see its own data. Data will be requested on the number of children who had a CP diagnosis before the age of 14 months. Dr. Gong indicated that the goal is to put together a report for the 2022 NEON VIII Summit. The NEON Executive Committee will work to create and pilot a survey before rolling it out to other follow-up programs. The hope is to have data on early CP diagnosis in Texas.

Dr. Johnson recommended inviting parent/family representatives to join the NEON Executive Committee. Participants concurred and thanked the families again for sharing their stories.

Adjourn
Dr. Gong thanked TCHMB staff, Sara Presti and Sheena Abraham, for their expert assistance and all those who participated in the meeting. Meeting adjourned at 5:15 p.m.

NEON Summit VII Meeting Summary prepared by Judith Livingston, PhD, MCHES, for the NEON Executive Committee.

NEON Executive Committee
Dr. Christine Aune, San Antonio Developmental Pediatric Service, Mednax
Dr. Alice Gong, UT Health San Antonio
Dr. Yvette Johnson, CookChildren’s Hospital-Fort Worth
Dr. Judith Livingston, Consultant
Dr. Martha Hemingway, McLane Children’s Hospital-Temple
Dr. Audelio Rivera, Pediatrix-Austin First Steps Kristina Tolentino-Plata, MS, THRIVE Program–Children’s Health-Children’s Medical Center Dallas and UT Southwestern Medical Center
Dr. Niraj Vora, McLane Children’s Hospital-Temple
Dr. Patricia Williams, University of Oklahoma Health Science Center, Oklahoma City