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The YCOE Family Resource Center is here to support Yuba County NICU families in the way of gas cards to help with the fuel cost of visiting your newborn in the NICU.

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Family SOUP is here to support Sutter County families in the way of gas cards to help with the fuel cost of visiting your newborn in the NICU.

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An agency to help improve the care of NICU families through education, collaboration and advocacy.

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NICU Family Alliance, Sacramento, California. 268 likes. Improving the Care of NICU Families through Education, Collaboration and Advocacy.

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"OUR LITTLE SPARROWS IS HERE TO WALK ALONGSIDE YOU DURING AND AFTER YOUR PREGNANCY NO MATTER THE OUTCOME. WE SEEK TO PROVIDE COMFORT, EMOTIONAL SUPPORT AND RESOURCES THROUGH PERSONALIZED DOULA SERVICES AND CERTIFIED GRIEF RECOVERY METHOD® PROGRAMS"

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WHEN FACED WITH A LIFE LIMITING OR FATAL DIAGNOSIS DURING PREGNANCY, THE ABUNDANCE OF SUPPORT AVAILABLE IN THE GREATER SACRAMENTO, CA AREA IS FOR AFTER THE LOSS... OF THE BABY. OUR LITTLE SPARROWS IS HERE TO WALK ALONGSIDE YOU DURING AND AFTER YOUR PREGNANCY NO MATTER THE OUTCOME. WE SEEK TO PROVIDE COMFORT, EMOTIONAL SUPPORT AND RESOURCES THROUGH PERSONALIZED DOULA SERVICES AND CERTIFIED GRIEF RECOVERY METHOD® PROGRAMS. -YOU ARE LOVED🌷

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WHEN FACED WITH A LIFE LIMITING OR FATAL DIAGNOSIS DURING PREGNANCY, THE ABUNDANCE OF SUPPORT AVAILABLE IN THE GREATER SACRAMENTO, CA AREA IS FOR AFTER THE LOSS... OF THE BABY. OUR LITTLE SPARROWS IS HERE TO WALK ALONGSIDE YOU DURING AND AFTER YOUR PREGNANCY NO MATTER THE OUTCOME.

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Grant to help cover the costs of grief counseling.

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When Stacy and I lost Phoebe, we desperately needed professional help to navigate our grief. We tried to go through our insurance, and that led us to counselors who were not trained or prepared for the level of pain we were feeling. We were blessed eventually to find someone who was, and we were able to pay for the costs of our therapy out-of-pocket. We recognize, however, that not everyone can do that, which is where Phoebe's Fund comes in. The money raised for Phoebe's Fund will be given as grants to couples who have experienced stillbirth or neonatal loss; the couples will use these grants to get treatment from very skilled grief therapists who will help them with their new normal. As long as we have donations from people like you, no one has to feel like they're handling their loss alone.

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The mission of Phoebe's Fund is to help remove the financial burden of grief therapy for couples who suffer from pregnancy and infant loss. Join us for Phoebe's Flight 5K on August 12th, 2018 to help raise money for this cause. Register today!

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This home-away-from-home provides shelter and comfort to families who must travel to the Sacramento-area in order to receive medical treatment for their child.

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Ronald McDonald House Charities Northern California

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Ronald McDonald House Charities Northern California - Ronald McDonald House Charities Northern California

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© McDonald's Corporation The following trademarks used herein are owned by McDonald's Corporation and its affiliates; McDonald's, Ronald McDonald House Charities, Ronald McDonald House Charities Logo, RMHC, Ronald McDonald House, Ronald McDonald Family Room, and Ronald McDonald Care Mobile. RMHC is recognized as a public charity under Internal Revenue Code section 509(a) and has 501(c)(3) status.

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Provides a resting place for families conveniently located on hospital grounds while visiting their critically ill infants. The RV 4 Preemies program is free of charge.

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Since 2009, the Aly & Izy Foundation [registered 501 (c) (3) tax-exempt non-profit organization] has been dedicated to providing families of premature or critically ill infants requiring treatment in the Special Care Nursery in the Sacramento and surrounding areas, a resting place for families, conveniently located on hospital grounds. The RV 4 Preemies program provides an RV to families in need free of charge.

* To reduce the financial hardships stowed upon families by extensive travel to and from the hospital (Hotels/Motel cost, fuel etc.)
* Provide families a place to rest and relax during their stressful, emotional and physically draining time
* Allows families to be close to their premature or critically ill newborns 24 hours a day
* Having these RV's on hospital grounds at a minimal to no cost to the families is one less thing for them to worry about, during their time of need.
Our foundation also provides comforting carepackages, bereavement items, gas cards, bedrest support and an online support group for NICU Families.

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Since 2009, the Aly & Izy Foundation [registered 501 (c) (3) tax-exempt non-profit organization] has been dedicated to providing families of premature or critically ill infants requiring treatment in the Special Care Nursery in the Sacramento and surrounding areas, a resting place for families, conveniently located on hospital grounds.

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Helps cover costs of fuel, necessities and possibly housing.

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Our mission is simple: help families with sick babies in a Neonatal Intensive Care Unit (NICU) spend more time with their babies.

We are looking for stories about families we have helped. Please share your story with us here.

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Our mission is simple: help families with sick babies in a Neonatal Intensive Care Unit (NICU) spend more time with their babies. We are looking for stories about families we have helped. Please share your story with us here.

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Housing option for families with a newborn in the NICU. Currently operating at Kaiser Roseville.

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Here at Rolling Relief, we know that sometimes all it takes to change the world is a little support. We have been determined to make an impact. The core of our efforts is to help give infants in the NICU a chance at a healthy future. Through this endeavor we hope to display the conviction behind our beliefs.

With this spacious and comfortable trailer, our goal is to provide temporary housing for those in need. This trailer is located at the Kaiser Hospital in Roseville, California. Parents of tiny babies are able to stay onsite and have a place to relax through their difficult time. Learn more about our work by getting in touch with us today.

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Here at Rolling Relief, we know that sometimes all it takes to change the world is a little support. We have been determined to make an impact. The core of our efforts is to help give infants in the NICU a chance at a healthy future.

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Nationwide classes to support growth and learning for families and our communities.

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Mighty Hope Photography for NICU families

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Mighty Hope Photography for NICU families

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I am a NICU Mom. I will always be a NICU Mom. What my family and I have lived through in the NICU has left me forever changed. It was the hardest thing I have ever been through, but ultimately I made it out on the other end.

As a Sacramento newborn photographer with my own medically complex child, I know all too well how challenging it can be to get great photos when there are health considerations. It is therefore my desire to support other NICU families by providing FREE Newborn or Family photography sessions to families with a medically complex baby. One hour, full gallery, no strings attached. Due to limited availability, currently restricting this to families with a baby or toddler (5 and under) that live in the Greater Sacramento Area and are actively medically complex. I would love nothing more than to be able to expand this in the future. Please contact me if you qualify or know someone who does.
Why "Mighty Hope"?
We called our son Mighty Levi when he was in the NICU, so the name is homage to that. Our medically complex babies are mighty! Fighters, every single last one of them. And so are their families. My hope would be to one day increase Mighty Hope Photography into a larger charity that connects more photographers with more families for free sessions, which is why I have created the name. But for now, it's just me.
My Story:
If it could go wrong, it went wrong for my pregnancy. Extremely high risk from start to finish, I ultimately had my son Levi at 28 weeks and 3 days gestation due to HELLP Syndrome, Preeclampsia, IUGR and multiple other complications! Levi was born at just 1lbs 15 ounces, spent 3 months in the Sutter Sacramento NICU, and 6 months on oxygen.

The 93 days we spent in the NICU were the hardest, most stressful, most emotional days I have gone through. But while it got better at home, it didn't particularly get easier. Eventually we made it out on the other side, and Levi is a happy healthy kid who is meeting milestones. But it wasn't always like that, and even once we were out of the NICU there was a lot of stress and mental anguish, not to mention the weekly doctors' appointments with various specialists. My desire is to help ease this mental burden of other families by providing a free service that will bring you joy. Having a mentally complex child can make it difficult to have Newborn or Family photos taken. But I do not think it is impossible, especially when taken by someone familiar with the medically complex life and willing to work with families to mitigate the additional health risks that exist.
Details:

I will come to your home healthy and fully n95 masked for the duration (any sickness symptom will lead to a reschedule). Options to meet in a outdoors are also there, if the family prefers and is comfortable with this.

I will work with you during the photoshoot to make sure everyone feels comfortable and safe during the photoshoot. I will stay for as long is necessary to get the desired photos. I am patient and great with kids, we will work together to find what works best.

You will receive a fully edited and fully downloadable gallery once the editing is complete. No charges of any kind ever in the process.

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Mighty Hope Photography - Free Portraits for Medically Complex Babies - Kristina Geddert Photography

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As both a Sacramento Newborn Photographer and Sutter Sacramento NICU graduate, I provide free family portraits to families with medically complex babies

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Sutter Medical Center, Sacramento Intensive Care Unit

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Delivering Loving Critical Care to Our Tiniest Patients

Since we opened the doors to Sutter Medical Center, Sacramento's Neonatal Intensive Care Unit, it has grown to become one of Northern California's largest and most advanced centers. We provide lifesaving services to infants born prematurely or with diverse diagnoses, including small for gestational age and multiple cardiac and congenital anomalies.

Infants are admitted to the NICU from our High-Risk Maternity Unit, Family Birth Center or through outside referral centers. We care for infants from 48 hospitals across 27 counties. Our family-centered program welcomes you, as parents, into the unit to participate in the treatment of your baby. Our NICU team consists of 10 board-certified neonatologists and more than 180 highly trained and experienced NICU nurses.
Support Network
In addition to our doctors and nurses, your baby and family will receive assistance from a large support network at the Children's Center at Sutter Medical Center, Sacramento.
Rooming In
In the case of some medically complex infants, it may be necessary to "room-in" with your infant to prepare for a safe discharge home. The NICU has sleep rooms available for this purpose. Your nurse will provide information if this service becomes necessary.
Private Breast-Pumping Room
For your privacy, we offer a breast pumping room on the unit or, if more convenient, we have pumps available for use at bedside.
Family Waiting Area
We welcome visitors and supervised children to relax in this room during your baby's stay in the NICU.

Our care for your infant doesn't stop once they are discharged from the NICU. We offer a High-Risk Infant Follow-Up Program that supports your baby's healthy growth and development and provides ongoing support and education programs.

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Sutter Medical Center Neonatal Intensive Care (NICU)

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Delivering Loving Critical Care to Our Tiniest Patients Since we opened the doors to Sutter Medical Center, Sacramento's Neonatal Intensive Care Unit, it has grown to become one of Northern California's largest and most advanced centers. We provide lifesaving services to infants born prematurely or with diverse diagnoses, including small for gestational age and multiple cardiac and congenital anomalies.

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UC Davis Medical Center Neonatal Intensive Care Unit

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Tour the UC Davis NICU

UC Davis Children's Hospital's Neonatal Intensive Care Unit (NICU) is a designated Level IV nursery for the Sacramento region. Its special care nursery is a Level II-designated unit for children who are seriously ill but expected to recover more rapidly.

The NICU admits infants who are either born at UC Davis or are transferred from other hospitals within our 33-county service area that stretches from Central California to the Oregon and Nevada borders.

The 49-bed combined NICU and special care nursery are staffed by neonatal caregivers 24 hours a day, seven days a week. Working with subspecialists in other fields, such as cardiology and pulmonology, our neonatologists provide expert care for infants with a variety of congenital and acquired health conditions, including:

Birth asphyxia

Congenital heart disease

Congenital anomalies (birth defects)

Jaundice

Infectious diseases like pneumonia

Respiratory distress

U.S. News & World Report recently ranked Neonatology as a leader in its 2020-2021 rankings of children's hospitals in the United States. Being ranked in the magazine's annual survey is a distinction given to only the top children's hospitals in the United States.

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Tour the UC Davis NICU UC Davis Children's Hospital's Neonatal Intensive Care Unit (NICU) is a designated Level IV nursery for the Sacramento region. Its special care nursery is a Level II-designated unit for children who are seriously ill but expected to recover more rapidly.

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Website to help parents of preemies connect to resources and information during their journey in the NICU and after the NICU.

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My name is Kristin Pierce and I'm a first-time mom of a miracle baby born at 28 weeks. My son spent over two months in the NICU and bravely fought through the need for ventilators, CPAP machines, blood transfusions and phototherapy (for jaundice). Having a child in the NICU is one of the most challenging experiences a parent can face.

My goal is to help other parents of preemies connect to resources and information that will be helpful to them as they navigate through their NICU experience and the months after. I hope you find the information here to be timely and useful. Please feel free to contact me with any questions, concerns or suggestions.

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My name is Kristin Pierce and I'm a first-time mom of a miracle baby born at 28 weeks. My son spent over two months in the NICU and bravely fought through the need for ventilators, CPAP machines, blood transfusions and phototherapy (for jaundice).

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Pregnancy and Infant Loss Support Group

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It is unfortunate HOW we came to find Sharing Parents, but we are so thankful for the support and compassion they offer, since the grief journey of losing an infant/child seems so lonely. It's comforting to know that we are not alone and that there are so many thoughtful and caring volunteers at Sharing Parents who are willing to help you through such an overwhelming grief process.

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"Our most important goal is to help guide families through the terrifying rollercoaster of their NICU journey, and beyond into recovery."

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PreemieWorld, LLC is a support group and educational forum founded by Deb Discenza, accomplished writer, speaker, and mother to her own preemie.

Our most important goal is to help guide families through the terrifying rollercoaster of their NICU journey, and beyond into recovery. We firmly believe that each and every preemie family can grow to meet these challenges with the love and encouragement of other preemie parents and neonatal professionals.

Educate. Empower. Connect.

The PreemieWorld forum, newsletters, and social media outlets seek to address the medical community as well as the general public, and educate both parties on how best to offer support to preemie parents.

Our mission is to relay the medical information parents receive in layman's terms, and build a bridge between the parenting and professional worlds that surround premature infants. Through relateable writing and group support, PreemieWorld helps create a "new normal" for preemie families in the midst of the NICU chaos.

SUBSCRIBE

Sign up to receive our monthly Preemie Family or Preemie Pro Newsletters.
JOIN MAILING LIST

SUPPORT

Connect with other preemie parents who understand your journey.
ACCESS COMMUNITY

CONTACT

Have something on your mind? Send us your questions, comments, or concerns.
SEND US A MESSAGE

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PreemieWorld, LLC is a support group and educational forum founded by Deb Discenza, accomplished writer, speaker, and mother to her own preemie. Our most important goal is to help guide families through the terrifying rollercoaster of their NICU journey, and beyond into recovery.

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Families with preemies might wonder what developmental stage their child might be at or your already having concerns about your child's development. Take the Ages and Stages Questionnaire and receive feedback from a Help Me Grow Coordinator on your child's development and resources that can help support you and your child.

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﻿ ﻿ ﻿ ﻿ ﻿ ﻿ ﻿ ﻿﻿ A developmental screen provides a snapshot of how your child is growing and learning. Screening allows youto monitor how your child is developing overall and catch concerns early. See the table below for more information and to start a developmental screening! Keyword search: ASQ, asq, Asq

A behavioral screening provides a snapshot of your child's social-emotional functioning and well-being. Completing the behavioral screen allows you to objectively monitor your child's behavior and may highlight areas of possible concern. See below for more information, instructions for completing the screening, and activities you can do to improve your child's social-emotional functioning.

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﻿ ﻿ ﻿ ﻿ ﻿ ﻿ ﻿ ﻿﻿ A developmental screen provides a snapshot of how your child is growing and learning. Screening allows youto monitor how your child is developing overall and catch concerns early. See the table below for more information and to start a developmental screening!

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Families with preemies might wonder what developmental stage their child might be at or your already having concerns about your child's development. Take the Ages and Stages Questionnaire and receive feedback from a Help Me Grow Coordinator on your child's development and resources that can help support you and your child.

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The Ages & Stages Questionnaires®, Third Edition (ASQ-3™) pinpoints developmental progress in children between the ages of one month to 5 ½ years.

Evidence shows that the earlier development is assessed-the greater the chance a child has to reach his or her potential.
What is ASQ-3?
ASQ-3 is a set of questionnaires about children's development . It has been used for more than 20 years to make sure children are developing well . A screening provides a quick look at how children are doing in important areas, such as communication, physical ability, social skills, and problem-solving skills . ASQ-3 can help identify your child's strengths as well as any areas where your child may need support.

As a parent or caregiver, you are the best source of information about your child. That's why ASQ-3 questionnaires are designed to be filled out by you . You will only need 10-15 minutes . It's that quick and easy . Here's how ASQ-3 works:

You will answer each question "yes," "sometimes," or "not yet," based on what your child is able to do now.

Your answers help show your child's strengths and areas where he or she may need practice.

To answer each question, you can try fun and simple activities with your child.

These activities encourage your child to play, move around, and practice day-to-day skills.

After you complete the questionnaire, a professional will share the results with you.

If your child is developing without concerns, there is nothing more you will need to do. You may try the next ASQ-3 age level as your child grows and learns new skills . There are 21 questionnaires that you can use with children from 1 month to 5½ years old . If your child has trouble with some skills, your program will help you with next steps . Finding delays or problems as early as possible supports young children's healthy development.

You are an active partner in your child's learning and development. By completing ASQ-3 questionnaires, you are making sure your child is off to the best possible start!
Click here to complete a developmental questionnaire!
El Cuestionario de Edades y Etapas identifica el progresó del desarrollo en niños entre un mes a 5 ½ años.

Evidencia ensena que lo más pronto que el desarrollo es evaluado-aumenta la probabilidad que un niño llegue a su potencial.
¡Haga clic aquí para completar un cuestionario de desarrollo!

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Fill out a FREE ASQ-3 Developmental Screening Here! Llene un gratis evaluación del desarrollo ASQ-3 aquí

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The Ages & Stages Questionnaires®, Third Edition (ASQ-3™) pinpoints developmental progress in children between the ages of one month to 5 ½ years. Evidence shows that the earlier development is assessed-the greater the chance a child has to reach his or her potential. What is ASQ-3?

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Yuba County families can find support to local programs, agencies and child development through your local First5.

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Subscribe to stay informed!

WELCOME TO FIRST 5 YUBA COUNTY

First 5 Yuba County's vision is that all children are healthy and thriving in safe and nurturing family environments and ready to succeed in their educational experiences.

FAMILIES

First 5 Yuba's Parent Portal is designed to provide parents with resources and information on topics such as brain health, nutrition and child care services.

PROVIDERS

At First 5 Yuba, we understand that providers are parenting partners and play an integral role in child development. Learn more about resources and information tailored specifically for providers.

COMMUNITY

First 5 Yuba is ALL ABOUT COMMUNITY! Learn how to build a stronger, healthier more resilient world for parents and children.

First 5 Yuba County is committed to reducing health dipartites by advancing Racial Equity, Diversity and Inclusion. Through culturally appropriate practices, targeted interventions and trauma informed care First 5 Yuba works to meet the culturally, linguistically and geographical diverse needs of Yuba County Children.

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Families | First 5 Yuba County | Marysville

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First 5 Yuba County's vision is that all children are healthy and thriving in safe and nurturing family environments and ready to succeed in their educational experiences. #Families #Providers #Community

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Sutter County Children & Families Commission

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Sutter County Children & Families Commission

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Sutter County families can find support to local programs, agencies, and child development through your local First5.

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Sutter County Children & Families Commission

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SutterKids.org is the website of the Sutter County Children & Families Commission.

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"At CHS, we recognize that a child’s health, safety, well-being, and happiness start at home with their parents and family. In order for a child to succeed, his or her family must succeed. CHS offers a variety of excellent services and resources for parents."

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At CHS, we recognize that a child's health, safety, well-being, and happiness start at home with their parents and family. In order for a child to succeed, their family must succeed. CHS offers a variety of excellent services and resources for families.

Please explore the links below that may be particularly beneficial to you as a family member.

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Children's Home Society of California | For Families

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At CHS, we recognize that a child's health, safety, well-being, and happiness start at home with their parents and family. In order for a child to succeed, their family must succeed. CHS offers a variety of excellent services and resources for families. Please explore the links below that may be particularly beneficial to you as a family member.

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Realities of pain in the NICU. The power of kangaroo care.

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Realities of pain in the NICU. The power of kangaroo care.

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When Mats Eriksson was just starting off as a nurse in the neonatal intensive care unit in the 1980s, he truly hated one part of his job. To draw blood for the daily metabolic test, he had to prick the babies' heels with a tiny lancet and squeeze their heels to collect enough blood for analysis. It was hard to do, and hard to watch.

"The children were crying; the mothers almost fainted," he says. "I was sweaty all over. It was a really tough job for everyone. And we had nothing to offer."

By anything to offer, he means drugs to treat the infants' apparent pain. Strong drugs like morphine can be dangerous for such young bodies. Even everyday drugs like Tylenol and Advil can be harmful to use in infants because of their potential impacts on the liver and kidneys.

But a bigger reason why was more frustrating. "In those days, we did not believe that they could feel pain," Eriksson says of infants. "We could see it, of course, but science said 'no.'"

The NICU (neonatal intensive care unit) is where infants who are born prematurely - meaning infants born before 37 weeks of pregnancy - and full-term infants (who are born around 39 or 40 weeks) with health issues spend the first weeks and, often, months of their lives. Every day, they encounter painful pricks and prods from hospital staff to monitor them and keep their frail bodies alive. Eriksson recalls that even when the children needed invasive procedures like open-heart surgeries, they were done without any anesthesia or pain medication.

Since then, a lot of progress has been made in recognizing that premature babies in the NICU can feel pain - and, more importantly, that the pain matters.

Even though the infants will not remember the distress, it's believed these painful experiences add up to something like a lasting psychological injury, impacting brain development and their ability to regulate emotions later in life.

But how to treat this pain - and even how to recognize it in the moment, as some preterm babies are too weak to cry? Those are still questions without perfect answers.

"We've been poor, and continue to be poor, at recognizing pain and distress in our babies," says Terrie Inder, the chair of pediatric newborn medicine at Brigham and Women's Hospital in Boston. "And we don't know how to treat it. That's all absolutely true."

But now scientists like Inder are asking: Could one solution be as simple as skin-to-skin contact - loving touch - from a parent? The experience of pain in the NICU seems to shadow children as they grow up, leaving them at increased risk for developmental challenges and behavioral struggles. If there really is a healing power in touch, "that could make a lifetime of difference," Inder says.

From almost universal loss to survival

There's a lot about treating some of the most vulnerable, tiniest humans on Earth that's sad and frustrating. But let's start with the good news: The NICU is a true modern miracle, a place where many waking nightmares turn into stories with happy endings.

Naomi Rendina experienced this for herself. Today, she's a PhD medical historian. But 13 years ago, she was 22 years old and pregnant for the first time.

"I spent my whole life imagining what it was going to be like to be pregnant and what it was going to be like to be a mom," Rendina says. When she got pregnant, she was so excited.

But when she was 30 weeks pregnant, she went in for a checkup. "It went very quickly from a very healthy, very normal pregnancy to a very dangerous, very scary pregnancy," she says.

Her blood pressure was high. That was just the start. She had preeclampsia, a dangerous condition that can in some cases be deadly. Her liver was creating enzymes that her kidney could not filter out. "And because of the proteins in the blood," she says, "my heart was working exceptionally hard. My body couldn't handle it."

Rendina's life was at risk, and the only solution was to deliver her baby more than two months early. She was scared.

Rendina was taken to a nearby hospital, where she had an emergency C-section. There, the medical staff brought her daughter out backward, or, as Rendina puts it, "butt to the world."

Rendina waited to hear a cry.

It was silent for what felt like the longest time.

But then, there it was. "But it wasn't the scream of a newborn," she says. "It sounded like the tiniest little kitten. It was so tiny, but it was there. She made that effort and she cried."

The tiny voice was coming from a teensy 2-pound, 7-ounce body that needed help breathing for the first few hours of her life. "She looked like a baby, but without all the chonk," Rendina says. She needed to grow.

That was the beginning of a 92-day hospital stay in the NICU until her daughter was strong and developed enough to go home. While the baby didn't need any big, invasive surgeries, it wasn't an easy experience. Every day, there were these pricks and prods like those Eriksson described to draw drawn from the baby's heel. There were lots of intravenous needles placed into her veins, and sometimes the veins ruptured.

Even in the 2000s, Rendina recalls that the medical staff told her the baby wasn't feeling pain. Instead, they used terms like "sensory overload," she says.

Every NICU infant's experience is different. But Rendina suspects her daughter suffered some psychological and behavioral consequences as well. She was late to learn to walk, and had night terrors as an infant. Rendina can't be sure they were the result of the NICU stay, but she wonders if it was because her daughter was having dreams of being confined.

Rendina's daughter is now healthy, and recently celebrated her 13th birthday. "She is a delightful young woman," Rendina says, kvelling. "She is smart. She's adventurous. She's beautiful. I'm only a little biased."

These days, a lot of stories like Rendina's end well. Children born around 28 weeks - that's 12 weeks early - have an 80 to 90 percent chance of surviving. They grow up to be healthy kids, albeit sometimes with some extra health or developmental challenges. But just a few generations ago, the technology didn't exist to save them. In the 1960s, more than half of all infants born in the US before 32 weeks died.

"The progress in neonatal medicine has been startling," Inder says, going from "almost universal loss to almost universal survival." That is, at least in wealthy countries like the United States; there are still large global disparities in preterm infant survival.

That swing from loss to survival started in the '60s, catalyzed by the death of Patrick Kennedy - the infant son of President John F. Kennedy and first lady Jacqueline - who was born five and a half weeks premature and died of respiratory distress syndrome. In the wake of the first family's tragedy, money and attention poured into NICU research.

With the money and attention came progress. In the next decades, doctors were able to miniaturize medical equipment for use on preterm infants. Critically, they discovered premature lungs needed a substance called surfactant that aids in breathing. Now, "a baby can be born four months early and we are able to provide lifesaving treatments," Inder says.

It's miraculous progress. But amid all this advancement, medical researchers overlooked pain. They didn't think these preterm infants - or any infants - could feel it.

How doctors learned premature infants felt pain

Pain is complicated, even in adults. In premature infants, it's even harder to pinpoint.

Throughout our bodies, there are receptors that sense mechanical forces, like touch and pain. These are the doorways through which forces from the outside world enter our nervous systems. There's one for light touch, like the graze of a finger against your arm; there are even different doorways for heat and cold.

But ultimately, pain is something we experience in our brains. "So the central dilemma is how to recognize pain in these babies, because they can't talk and tell us what they're experiencing," Inder says.

So for a long while, doctors knew that these preterm infants had the nerves to sense pain, but they didn't think the brain had developed enough to experience it.

"They see it almost like a blob of clay that hasn't got the same degree of integrity, experience, and capacity to feel," Inder says. "This was very much the case for the premature baby, who was believed in these early years, right through into the '80s, to not experience pain because they weren't fully developed. So surgical procedures - such as open-heart surgery - were done without any anesthesia or pain relief during this period."

Even though the infants will not remember the distress, it's believed these painful experiences add up to something like a lasting psychological injury

To pause on something here: This conversation about how developed or not developed a preterm baby's brain is can quickly get near conversations about fetuses, or what this could mean for the abortion debate. But the health care professionals I spoke to saw the experiences of these preterm babies as existing in a separate scientific and ethical realm. The infants are outside the womb, for one; their developing brains are experiencing things that are radically different from what happens inside the womb.

"The turning point," Inder says, "came from the observations of a pediatric anesthesiologist who noted that during these open-chest cardiac procedures that were done on these babies without any anesthesia or pain relief, the heart rate went up dramatically." That indicated there was some sort of pain response happening with the infants.

"So he began also measuring other markers of stress hormones and showed that indeed there were these dramatic rises in stress hormones, indicating the baby indeed was experiencing distress at the time of this surgical procedure," she says. "This was in the late '70s, early '80s. And I hate to say that the evolution of knowledge and understanding is still in progress."

Babies don't remember the pain, but there's evidence it could still leave a scar

Today, doctors and medical researchers acknowledge these young infants can feel pain. And in some ways, the pain they feel might be worse than what adults feel.

"They can't localize the pain the same way that we can as adults," Inder says. "So a heel prick on the back of the heel can feel as though it's coming somewhere from the whole foot or even the leg. So it's a much more diffuse and impactful kind of pain."

But what Inder and her colleagues say is the problem with pain in the NICU is that it's not just about any one moment of it. NICU stays can last months. And every day, the babies encounter many painful things.

"The average premature baby will go through at least 10 to 12 unpleasant or painful experiences every 24 hours for the first four weeks of life," Inder explains. That can include surgery, but also less dramatic procedures like placing feeding or breathing tubes through the nose or mouth, or drawing blood.

These moments of pain matter not just because they're feeling pain in those moments. Rather, it seems that a large volume of pain, over time, is suspected to cause or contribute to negative changes in brain development.

The number of painful experiences a premature infant has - regardless of how sick they are - is correlated with negative changes in brain development. The more pain, the worse the outcomes.

"What we see is smaller hippocampus, the memory area, smaller amygdala, which is the area for emotional processing," Inder says. "We see alterations in the cerebellum, which is a critical area for language and motor development. These are all very important regions for later childhood and adult brain."

Those changes manifest in lower IQ, lower language skills, poorer attention, and poorer emotional regulation. There's even evidence to suggest that this exposure to pain leaves them with a lower pain threshold later in life, too.

How, exactly, pain causes these changes is still a topic of ongoing research. But Inder says it has to do with the fact that in the last 12 weeks of a pregnancy - the weeks in the womb that are missed due to a premature birth - a lot of brain development is still happening.

During that time, "your brain goes from being completely smooth to being completely folded, just like the adult brain," she says. "And so this period is very sensitive to any environmental influences."

The problem is that the still-developing brain is also sensitive to pain-killing drugs like opiates. "The opiate medications are sort of like bringing out an AK-47 to take down the problem," Inder says. For one, she says opiates are better at treating the intense, acute pain of a surgical operation, and are less effective for the repeated, chronic type of pain the infants more regularly experience. "It doesn't improve brain development to give opiates," Inder says. "And if anything, there may be additional negative effects on development," she says.

Instead of opiates, "we may need something gentler and kinder," she says.

The hope is that if researchers can find ways to treat pain in these premature babies, then perhaps they can stave off the changes in brain development. And, thankfully, the ideas to do it are very simple. But they would take a lot of societal investments to implement.

The healing power of touch

Eriksson, the NICU nurse who got sweaty taking blood samples from babies, turned his discomfort with infants' pain into inspiration for research. Today, he runs an international research group based in Sweden called Pain in Early Life, or PEARL. He and his colleagues study simple ways to alleviate infants' pain without drugs.

For instance: He'll use sugar. "Glucose, as a pain relief," he says. Yes, a spoonful of sugar can help the medicine go down. If he feeds an infant some sugar before drawing blood from their heel, "they don't react anymore," he says. "The work has been to try to explain why this works and nobody actually has."

Regardless of how it works, sugar isn't an ideal solution either. Too much sugar in the NICU is also associated with negative effects on cognitive development. (Yes, treating premature infant pain is hard!)

So while there is a place for glucose in treating pain, Eriksson and his colleagues prefer an even simpler and potentially more powerful idea: parent's touch, or skin-to-skin contact - placing preterm babies directly on a parent before doing something painful. Any skin contact seems to help, but research suggests that parents' touch is more effective than that of a stranger's (slightly favoring mothers over fathers).

"When you draw blood from an infant who is lying on their mother or father, and you don't see any reaction on the infant ... that doesn't happen all the time, but when it happens, it feels very good," says Emma Olsson, a NICU nurse and researcher in Sweden who works with Eriksson.

This approach is sometimes called " kangaroo care." And it's not super rare; it's common practice in the US for infants to be placed directly on a parent's bare chest immediately after birth. It's also used in US NICUs. What's different is that the course of treatment the Swedish researchers advocate for is much, much more involved than what typically occurs.

In Sweden, parents of children in the NICU are paid to stay in the hospital; they're essentially recruited to be nurses to be around as much as possible for pain management. (Parents responsible for other children will often do shifts with a partner, Olsson explains.)

"In my 20 years at the NICU, I've gone from being the one taking care of the infant to guiding the parents, and then teaching them how to take care of their own infant," Olsson says. "And that's how it should be." In Sweden, parents will hold their children through small procedures like blood draws, but also sometimes through more invasive ones like intubations (i.e., inserting a breathing tube). "Some might think that that's not a good idea because it's scary for the parents," Olsson says. But if the parents are up to the task, she says, they'll be put to use.

You might be thinking: Of course this works in Sweden, which has a large social safety net. But in the US?

NICU stays can last months, and many parents in the US just can't always stay there the whole time. They may not be able to get medical or parental leave from work.

Rendina, the mother of the girl born at 30 weeks, had the resources to be with her child all the time. She felt really lucky. "Our hearts were crushed every day," she says, "seeing the babies that weren't being held because their parents were so busy working."

This is especially true for women of color and low-income women: They have some of the highest rates of preterm birth in America, and also the least access to insurance and generous paid leave.

"How can we expect them to take time off of work, to be able to get to the hospital or afford all of the [travel] every day to go see the baby," says Rendina, who completed her dissertation on the history of the NICU, inspired by her own experience. "So we need to be creating these systems of support."

How do we know if it's working?

There's a final wrinkle to the NICU-pain puzzle: It can be really hard to know if sugar or parental touch is working - or when to deploy such techniques - because scientists don't have objective tools to measure infants' pain.

Right now, doctors and nurses mostly have to rely on subjective measures: by looking at the expression on babies' faces or how they move their bodies.

But there are challenges here. "Babies cry and make these behaviors for many, many different reasons," says Rebeccah Slater, a pediatric neuroscientist at the University of Oxford. "It might not be just whether they're in pain." There's also the case that some preterm infants don't cry out when something painful happens to them - because they are too weak.

So Slater wants to do better.

"My particular interest is trying to look at the brain," Slater says, "to see what's happening in the brain when babies experience pain, because fundamentally pain is an experience that happens in that organ."

In her studies, Slater hooks a baby's head up to an electroencephalogram (EEG), a device that measures electrical signals coming from the brain. "And so what we've been able to do is start looking at specific changes in brain activity when we know a procedure is happening that's painful," she says. "And in real time, we can look at these changes and get a score." A pain score, that is.

Her big hope is that these pain scores can be used bedside to help nurses and doctors treat individual babies, though the technology isn't ready to be deployed more broadly yet. "It's all experimental," she says.

Beyond the bedside, she wants these measures to be used in clinical trials. It's hard to judge what treatments work more broadly without an objective measurement. That work is still underway. "We're partway through a clinical trial, which is specifically looking at whether the parents who stroke their babies before a painful procedure can reduce the brain records I've been describing."

But other smaller studies that have been done so far - including one by Olsson - that include measurements of brain activity suggest that touch really is helping in a deep way.

Though how it works isn't precisely known, the answer could be quite simple.

"I think we all feel better with the human touch," Olsson says. "Skin-to-skin makes you feel very close to someone, either if it's holding hands or just being near someone. I think that's just how we are programmed."

There are so many nerve endings on the skin, so many doorways to introduce a pleasant feeling into your body, to distract from, or even override, the pain.

"Think of yourself," Eriksson says. "If you have a toothache, if someone holds your hand or gives you a hug, that relieves. Gentle human touch can be very good."

For a premature infant, this touch is as close as they can get to being back in the womb. "You're feeling your mother or father breathing," Eriksson says. "You are snuggled up."

In the place of proof, there's hope

Let's say all the ideal conditions are in place. Scientists build well-calibrated machines to objectively monitor an infant's pain, and those monitors show that skin-to-skin contact is healing. And not only does it work, but society helps it happen: Parents are supported to stay in the NICU however long it takes and provide that healing touch. There are other ideas in the works too: redesigning NICU wards to be more soothing spaces, with calm music, better lighting, and more comfortable cribs.

Let's say all that is implemented, a question remains: Would it work? Would it prevent some of the negative consequences of all those painful experiences, the altered brain development, the behavioral issues down the road?

It's not currently known. "If we treat the pain here and now, I would hope that means that we will treat some of the negative consequences of the pain later in life," Olsson says. "But I don't have any scientific proof."

It's not possible to do a randomized controlled trial where some children get access to their parents' touch and some don't. "But if we change the system, if we are better, then we'll hopefully see a better outcome," Eriksson says. In the place of proof, there's hope: "You need to have hope," he says. "Otherwise I would not do this."

When I asked Inder what she hoped people would take away from this story, she said she hoped that people just don't feel despondent that babies are suffering. She wants them to know how resilient they can be, and how much joy they can bring, despite arriving with a rough start.

"Many babies are surviving through challenging times by their strong spirit and their strong will," Inder says. "And we have enormous advances and technologies to help them. We just still have a gap in science to be able to do this really well."

Rendina's daughter still has some scars from NICU needles that were embedded in her hand. But to Rendina, these scars aren't about pain; they're about resilience.

"I showed her, last week, the scars on her hand," Rendina says. "And reminded her that anytime that she has any sort of doubt about herself, or doubts of her capability, to look at her hand. Those little scars are there to remind her that she's capable of more than she'll ever even understand. Because those are her scars of her time in the NICU - and her reminder that she's my hero."

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Doctors learned how to save premature infants' lives. They forgot about pain.

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When Mats Eriksson was just starting off as a nurse in the neonatal intensive care unit in the 1980s, he truly hated one part of his job. To draw blood for the daily metabolic test, he had to prick the babies' heels with a tiny lancet and squeeze their heels to collect enough blood for analysis.

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The HRIF program was established to identify infants who might develop CCS-eligible conditions after discharge from a CCS-approved Neonatal Intensive Care Unit (NICU)

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Becoming a CCS-Paneled HRIF Provider
Program Reporting Requirements and Forms
HRIF Program Letters
HRIF Directory Updates

The California Children's Services (CCS) High Risk Infant Follow-Up (HRIF) program was established to identify infants who might develop CCS-eligible conditions after discharge from a CCS-approved Neonatal Intensive Care Unit (NICU). CCS Program standards require that each CCS-approved NICU must have an organized program or a written agreement with another CCS-approved HRIF Program to ensure the follow-up of discharged high risk infants.

The CCS Program's goal of identifying infants who may develop a CCS-eligible medical condition provides for a number of diagnostic services for children up to three years of age. The following are reimbursable diagnostic services:

Comprehensive history and physical examination with neurologic assessment;

Developmental assessment (Bayley Scales of Infant Development [BSID] or an equivalent test);

Family psychosocial assessment;

Hearing assessment;

Ophthalmologic assessment; and

Coordinator services (including assisting families in accessing identified, needed interventions and facilitating linkages to other agencies and services).

All HRIF services are provided by a multidisciplinary team including, but not limited, to a Medical Director (Pediatrician or Neonatologist), Social Worker, Ophthalmologist, Audiologist, an HRIF Coordinator, and an individual to perform the developmental assessment.

All members of the HRIF multidisciplinary team require CCS paneling except a Pediatric Nurse Practitioner (PNP), unless functioning as the HRIF Coordinator.The HRIF Coordinator must be CCS-paneled.

Information regarding paneling and the online application can be found at: Becoming a California Children's Services Provider

The California Children Services (CCS)/California Perinatal Quality Care Collaborative (CPQCC) High Risk Infant Follow-up (HRIF) Quality of Care Initiative (QCI) has developed a web based reporting system for CCS HRIF-eligible clients.CCS HRIF Programs are required to submit reports to CPQCC using the online HRIF Reporting System.

If you are unable to sign in to the CCS HRIF Reporting System, contact:

Erika Gray, HRIF QCI Project Manager
California Perinatal Quality Care Collaborative (CPQCC)
Phone (650) 725-1306
Email: eegray@stanford.edu

Staffing changes and annual directory updates can be made on the CCS Special Care Center Directory Update Sheet (DHCS 4507).

HRIF Special Care Center numbers can be obtained at:

For questions, please contact us at the address or email below:

California Department of Health Care Services
Integrated Systems of Care Division
Provider and Facility Site Reviews Unit
P.O. Box 997437, MS 4502
Sacramento, CA 95899-7437

Email: CCSFacilityReview@dhcs.ca.gov

# data[].attributes.attachment_link.description
Becoming a CCS-Paneled HRIF Provider Program Reporting Requirements and Forms HRIF Program Letters HRIF Directory Updates The California Children's Services (CCS) High Risk Infant Follow-Up (HRIF) program was established to identify infants who might develop CCS-eligible conditions after discharge from a CCS-approved Neonatal Intensive Care Unit (NICU).

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Early Intervention Services - Alta Regional Center

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Early Intervention Services - Alta Regional Center

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Alta California Regional Center creates partnerships to support all eligible individuals with intellectual and/or developmental disabilities.