Resources for Preemies

Preemies in the News

PreemieCare provides the following resources for parents of premature infants. Many of these resources and resource ideas came from other parents of preemies and local preemie support groups which are listed as a PreemieCare Spotlight Group.

 

 

 

Preemie Parents
Resources for both mothers and fathers of preemies including tips for working parents

Preemie Support Groups
A list of international, national, and state-by-state support groups for parents of preemies
Spotlight groups
Sign up your group

 

 

 

 

NICU Tips, Tools, and Techniques
Weight conversion tools, infant massage, skin-to-skin care (kangaroo care), caring for siblings, and much more

Discharge Planning
What parents needs to know before taking home their preemie(s)

 

 

 

 

Medical Conditions and Treatments
Common challenges, test, and treatments for preemies

Preemie Development
Developmental milestones, adjusted age, early intervention, and special education programs, etc.

 

 

 

 

Medical Professionals
Learn more about the medical professionals who treat premature infants

Preemie Inspirations
Poems, letters, quotes, and other inspirational material related to premature babies

 

 

 

 

Breastfeeding
Information about breastfeeding in the NICU and beyond

Home and Respite Care
Resources for home nursing, respite, and other post-discharge care for preemies

 

 

 

 

Family and Friends of Preemies
Resources for grandparents, friends, and volunteers, as well information about gifts, showers, and more.

Preemie Products
Car seats, medical equipment, clothing, and more.

 

 

 

 

Emotions and Stress
Post-partum depression, marital stress, and more

Finances and Insurance
Tips and resources to help families address the medical costs and insurance claims for their preemies

 

 

 

 

Bereavement
Resources and information for parents and family members associated with the loss of a preemie

Preemie Legislation
We post information about pending or current legislation that may affect preemie families here

 

   
 

State Resources

Find links to a vareity of resources at the state-by-state level including government services and programs.

   
   
Preemie Parents
Resources for both mothers and fathers of preemies including tips for working parents
  

Tips from Dads of Preemies

 

 



Information Provided by Preemies Today  

A PreemieCare Spotlight Group Resource



Dads have a unique perspective on taking care of preemies. Here are a few tips from other Dads to help you out:

  • Use exercise and massage as a way to interact with your preemie. It helps connect with the baby and gives you some "Dad time" while helping build muscle tone for the baby.
  • Let Mom rest while you feed the baby if your baby is bottle fed.
  • Try different ways of holding your preemie, you probably won't do it the same way as your wife but that's okay because the baby knows its you holding them.
  • Keep a journal of what's going on. Write down how much your baby weighed today, what the doctor told you, or the latest achievement of your preemie.
  • Be strong for your family when you have to be, but make sure you talk about your grief and fears as well.
  • Asked to be addressed as well, so all instructions and information do not get directed solely to just mom.
  • Take one day at a time.
  • Participate in kangaroo care with your baby

 

Preemie Parenting Resources

 

 



Healthychildren.org is a new Web site designed for families seeking child and adolescent health information consistent with the American Academy of Pediatrics' (AAP's) policies and guidelines. The site contains information on more than 300 topics compiled from AAP parenting books, patient-education materials, and fact sheets. The site contains a variety of resources for parents of preemies including.

 

Premature Infant Websites

Learn what prematurity is, who it affects, what causes it, how it can be prevented, how it's diagnosed, what health problems and treatments are associated with it, what the prognosis for infants born preterm is, and find resources related to prematurity. Read now


PreemieVoices.com is a Web site with resources and information about policies and legislation impacting the care of premature infants.  Visitors to the site can view Current Issues, State and Federal Legislative Issues, News and Events, Resources and link to other sites that increase awareness on issues for this population.  PreemieVoices.com also includes free downloadable prematurity educational materials, an advocacy toolkit and information about state networks that are active in prematurity advocacy.  The site is sponsored by MedImmune Advocacy.

 

 

Preemie Parenting Book

 

 



This website is a companion to our book, Parenting Your Premature Baby and Child: The Emotional Journey (Fulcrum, 2004). We focus on the emotional aspects of parenting a preemie from pregnancy through childhood. We embrace the philosophies of family-centered care and developmentally supportive care for babies, and we are promoting the idea of developmentally supportive care for parents. Visit this website

 

 

 

  

 

 

Online Preemie Support

 

 



The Premature Infant.com website is designed to bring knowledge and emotional support to both parents of premature infants and the health professionals who care for them. 
http://www.premature-infant.com/


The site has:

  • Stories from preemie parents
  • stories from NICU nurses
  • NICU Dos and Don'ts
  • A list of preemie resources
  • A collection of online articles about preemies
  • The story of the founder's daughter MacKenzie

 

Online Resources on Preemies

 

 

The Meriter Hospital website offers an excellent area on its website for parents of premature infants. http://www.meriter.com/living/preemie/index.htm

See topics like:

  • Anticipating the Birth of a Premature Infant
  • Chances of Survival and Disability
  • Introduction to the Newborn Intensive Care Unit (NICU)
  • Common Problems and Diseases
  • Commonly Used Medications
  • Understanding and Parenting Your Preemie
  • Emotional Support
  • Things to Know Before Discharge
  • Things to Know After Discharge
  • Later Problems of Former Preemies
  • Resources for Parents
  • And more

Online Pregnancy Support

 

StorkNet is an online pregnancy and parenting support community that has a special section just for families with infants in the NICU. Check out their articles, tools, and other NICU resources. 
http://www.storknet.com/cubbies/nicu/index.html
 

 


"For Those Who Hold the Littlest Hands" is freely available eBook for NICU Parents from the NICU Parent Support Site. The eBook is filled with information, encouragement and resources to support NICU parents through their Neonatal Intensive Care Unit experience.

This eBook is a colorful and visually pleasing complimentary eBook has specially selected photographs and an exquisitely designed layout. Also included are the normal, expected responses to a sudden challenge or life changing event as well as suggestions for getting through this challenging time to be available and support your newborn.

 

Resources on Parental Stress Associated with Preterm Infants

About the author: Michael T. Hynan, Ph.D. is a professor at the University of Wisconsin-Milwauke. His research focuses on understanding the stress reactions of parents who have delivered a high-risk baby.

 

 

NICU: A Father's Perspective

 

Jeff Stimpson, author of “Alex: The Fathering of a Preemie,” is now a featured lecturer on NICUniversity.

Stimpson presented “All the Right Words: How to Speak to NICU Parents” at last year’s National Association of Neonatal Nurses convention in Nashville. The talk discussed how the premature birth of a child exposes parents to fear, guilt, and uncertainty that are difficult for even seasoned NICU nurses to fully understand.

Stimpson will offer participants his recommendations on phrasing, body language, and other nuances of communication, and participants discussed how to deal with parents’ feelings in the NICU.

Stimpson speaks frequently about his family. His son Alex, now 9 and PDD-NOS, is a former 21-ounce preemie who spent his first year in the hospital. “Alex” chronicles his family’s feelings, frustrations, and hopes as Alex fought failure to thrive, lung damage, the first signs of autism, and EI, feeding, and behavior issues in his early years.

Alex’s story continues at www.jeffslife.net, and Stimpson is working on a second book that will tell more about one family’s accomplishments and fears regarding living with autism. He and his wife Jill also do podcasts about special-needs parenting, at http://jillandjeff.podbean.com.

 

 

Online Support Web Pages

 

 

PreemieCare and MOST have both partnered with CarePages, a service that provides private personalized web pages for families with loved ones who are hospitalized or undergoing treatment for a medical condition. This service offers a way for expectant families on bedrest, families with babies in the NICU, or families with children or parents facing ongoing health concerns to efficiently and privately communicate updates with family and friends as well as receive message of support.  For more information, visit the PreemieCare CarePages or MOST CarePages web page today.

Knitting a Preemie Caps


Learn How: http://www.preemiecare.org/KnittingaPreemieCap.pdf

 

 

 

 

 

  

A Preemie’s Letter to Mom and Dad

 

http://www.preemiecare.org/rsv_letter.htm

 

 

 

 

 

 
NICU Tips, Tools, and Techniques
Weight conversion tools, infant massage, skin-to-skin care (kangaroo care), caring for siblings, and much more

 

NICU Resources

 

Transitioning Newborns from NICU to Home: Family Information Packet

 



The Healthychildren.org Web site is designed for families seeking child and adolescent health information consistent with the American Academy of Pediatrics' (AAP's) policies and guidelines. The site contains information on more than 300 topics compiled from AAP parenting books, patient-education materials, and fact sheets. The site also contains a variety of resources for parents of preemies including these that focus on the NICU experience.

 

What to Look for in a Neonatal Intensive Care Unit

What to Look for in a Neonatal Intensive Care Unit by Edward F. Bell, MD
Professor in the Department of Pediatrics, University of Iowa Children's Hospital.
This article provides details on how to assess an NICU to be sure your high-risk baby(s) will receive the highest care. http://www.uihealthcare.com/topics/medicaldepartments/pediatrics/neonatalintensivecareunit/index.html

 

Skin-to-Skin Contact (Kangaroo Care)

 

The My Kangaroo Care Links website provides a list of links to information about skin-to-skin contact or kangaroo care, including studies, stories, how-to’s, and the benefits of using kangaroo care.  
http://www.geocities.com/roopage/linkspage.html

 

 

NICU Glossary

 

Be sure to download your FREE copy of the PreemieCare NICU Glossary of terms and acronyms.

 

 

 

 

 

 

Multiples in the NICU FAQs

 

 

See the MOST FAQs (frequently asked questions) on the NICU.

 

 

 

 

 

Weight Conversion Chart




In the NICU you will often be told your baby’s weight in grams vs. pounds and ounces. In order to make converting these numbers easier for you and your family/friends, MOST/PreemieCare offer both online interactive converter and a printable conversion chart to take with you to the NICU.

 

 

 

 
Medical Conditions and Treatments
Common challenges, test, and treatments for preemies

 

Retinopathy of Prematurity (ROP)

Information Provided by The ROP Foundation A PreemieCare Spotlight Group Resource

Retinopathy of Prematurity is a short cycled blinding disease. It affects premature babies near the end of their NICU stay. Parents have to be informed of the signs and what to do and who to contact if they feel their baby needs to be seen by a professional, especially if their baby leaves the NICU before their actual due date. The onset for ROP is 30-32 weeks gestation.

There are approximately 3.9 million infants born in the U.S. each year; of those, about 28,000 weigh 2 3/4 pounds or less. About 16,000 of these infants are affected by some degree of ROP. About 90 percent of all infants with ROP are in the milder category and do not need treatment. However, infants with more severe disease can develop impaired vision or even blindness. Annually, about 1,500 infants develop ROP that is severe enough to require medical treatment. About 400–600 infants each year in the US become legally blind from ROP. This is just what is known with in the United States, just think about the effects of ROP world wide.

There are five stages of the Retinopathy of Prematurity disease:

  • Stage I - Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
  • Stage II - Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
  • Stage III - Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and "plus disease" develops, treatment is considered. "Plus disease" means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.
  • Stage IV - Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
  • Stage V - Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.
    Most babies who develop ROP have stages I or II. However, in a small number of babies, ROP worsens, sometimes very rapidly. Untreated ROP threatens to destroy vision.

Parents must advocate for their babies. Watch your baby closely for signs for example: he/she is not following objects or grasping at objects. If you notice anything you should call your baby’s pediatrician immediately.

To find out more about Retinopathy of Prematurity and support groups helping babies and children with low-vision and blindness visit
The ROP Foundation

Common Health Issues of Preemies



The Healthychildren.org Web site is designed for families seeking child and adolescent health information consistent with the American Academy of Pediatrics' (AAP's) policies and guidelines. The site contains information on more than 300 topics compiled from AAP parenting books, patient-education materials, and fact sheets. The site also contains a variety of resources for parents of preemies including these that focus on medical conditions and complications.

 

ABOUT SYNAGIS@, (Palivizumab) RSV Immunizations

 

Synagis@, (palivizumab), manufactured by Medlmmune, Inc., is indicated for the prevention of lower respiratory tract disease caused by Respiratory Syncytial Virus (RSV) in pediatric patients at high-risk for RSV disease. Synagis has been shown to be safe and effective in reducing RSV hospitalization in children with a history of prematurity (babies born at least five weeks early), with or without bronchopulmonary dysplasia (BPD).

In clinical studies, Synagis has been shown to be safe and generally well tolerated. RSV hospitalizations occurred among 53 of 500 (10.6%) patients in the placebo group (children not receiving Synagis) and 48 of 1002 (4.8%) patients in the Synagis group (children receiving medication), a 55% reduction (p< 0.001).

Synagis can be easily administered in the doctor's office, at home or in the hospital. Synagis is given by intramuscular injection once a month, before and during the RSV season (generally, early fall through spring).
Synagis is the only humanized monoclonal antibody for the prevention of serious RSV disease. This preventive medication is designed to bind to the RSV virus and help prevent the virus from infecting cells in the lung.
In clinical trials, no significant differences in adverse events were reported between placebo group and Synagis group. Synagis has been used safely in thousands of babies. Adverse events with Synagis may include upper respiratory tract infection, ear infection, fever, runny nose, and very rare cases of severe allergic reactions such as anaphylaxis and hypersensitivity reactions.

The cost of treating a child hospitalized for RSV can exceed $70,000.2 The cost of Synagis is approximately $5,000 for one season and is often covered by insurance.

Synagis in Congenital Heart Disease (CHD) 3

In a clinical study involving children under two years of age who had hemodynamically significant CHD, children who received Synagis experienced 45 percent fewer hospitalizations due to RSV compared to children receiving placebo (a placebo is an injection with no active ingredients). In the same study, children receiving Synagis also experienced statistically significant fewer RSV-related hospital days and fewer days of increased oxygen use compared to children receiving placebo. The study also demonstrated statistically significant fewer RSV-related hospital days and fewer days of increased oxygen use in the Synagis group compared to the placebo group.

SSPO3-186

 

 

 

Fact Sheet: RESPIRATORY SYNCYTIAL VIRUS


RSV, or Respiratory Syncytial Virus, is the most common cause of lower respiratory infection and viral death in children under 5 years of age and children under the age of 1 are especially vulnerable1. It is the leading cause of hospitalization in children under the age of one2. (References: 1Thompson WW, Shay DK, Weintraub E, et al. Mortality associated with influenza and respiratory syncytial virus in the United States. JAMA, 2003:289(2):179-186. 2Leader S, Kohlhase K. Respiratory syncytial virus coded pediatric hospitalizations, 1997-1999. Pediatr. Infec. Dis. J. 2002: 21(7):629-632.)

  • Premature babies or infants born up to four weeks early (also referred to as less than 36 weeks gestational age) are at increased risk for severe RSV disease. Since premature birth interrupts the final stages of normal lung development, premature children are more vulnerable to more severe lower respiratory tract infections.
  • Certain populations of children, including premature infants, children with chronic lung disease and/or congenital heart disease are at increased risk for complications from serious RSV disease.
  • According to the Centers For Disease Control and Prevention (CDC), RSV outbreaks occur worldwide typically from Fall through Spring. During RSV season in the USA, up to 125,000 children under the age of one year are hospitalized annually due to RSV-related illnesses1 and some of these children may die.2 (References: 1 Shay DK, Holman RC, Newman RD, Liu LL, Stout JW, Anderson LJ. Bronchiolitis-associated hospitalizations among U.S. children, 1980-1996 JAMA 1999;282:1440-1446. 2 Thompson, Shay, Holman, Roosevelt, J. Infec. Disease, 2001;183;16-22.)
  • RSV spreads easily from person to person through respiratory tract secretions that carry the virus: sneezing or coughing, hands that touch the nose, mouth, or eyes and then come in contact with another person or object. The RSV virus can survive up to 6 hours on hands and up to 12 hours on non-porous surfaces. Spread within families is common, especially when a school-aged child re- introduces the virus to the family. (Reference: Hall C. Clinical Infectious Diseases, 2000;31:590-6.)
  • Despite strict infection control procedures, hospital nursery units, daycare centers, and other similar institutions are at high-risk for RSV outbreaks.
  • The symptoms of RSV may be like a cold at first and can include: fever, runny nose, other cold-like symptoms. The symptoms may then get worse, and can include: coughing, difficulty breathing, wheezing (a whistling sound), rapid breathing.

SSP03-116

Visit the other
RSV Resources are available on the PreemieCare website.

 

 

RSV Letter to Family and Friends

 



Also be sure to download your FREE copy of the PreemieCare Letter template to send friends & family explaining the risks associated with preemies and RSV (PDF).

 

 

 

 

  

A Preemie's Lungs





"If Lungs were Trees..." graphically depicts the significant differences between a preemie's lungs and that of a healthy full-term infant.

 

 

 

 

 

 

 

Tracheostomies

 

 

 

 

 

 

 


Aaron's Tracheostomy Page, is a leading tracheostomy resource since 1996. The mission of Aaron's Page is to help assure the highest quality home care for children with tracheostomies, to provide needed tracheostomy information in order to ease some of the anxiety related to caring for a child with a trach. A well-informed family will usually experience less anxiety. And perhaps most important, to facilitate parent-to-parent networking and support. Information is necessary for parents of medically challenged children, however what often helps parents most is knowing that they are not alone.

 

Apgar Scores


The very first test given to your newborn, the Apgar score, occurs right after your baby's birth in the delivery or birthing room. The test was designed to quickly evaluate a newborn's physical condition after delivery, and to determine any immediate need for extra medical or emergency care.

Although the Apgar score was developed in 1952 by an anesthesiologist named Virginia Apgar, you may have also heard it referred to as an acronym for: Activity, Pulse, Grimace, Appearance, and Respiration.

The Apgar test is always given to your baby a minimum of 2 times: once at 1 minute after birth, and again at 5 minutes after birth. Rarely - if there are serious problems with the baby's condition and the first two scores are low - the test may be scored for a third time at 10 minutes after birth.  See Kids Health to learn more about this topic

 
Medical Professionals
Learn more about the medical professionals who treat premature infants

About NICU Professionals



The Healthychildren.org Web site is designed for families seeking child and adolescent health information consistent with the American Academy of Pediatrics' (AAP's) policies and guidelines. The site contains information on more than 300 topics compiled from AAP parenting books, patient-education materials, and fact sheets. The site also contains a variety of resources for parents of preemies including these that focus on health care personnel in the NICU.

 

Preterm Infants A Collaborative Approach to Specialized Care

In June 2006, the Institute of Medicine (IoM), released a comprehensive study, Preterm Birth: Causes, Consequences, and Prevention. The report was a result of the IoM’s efforts, in particular the Committee on Understanding Premature Birth and Assuring Healthy Outcomes, to better understand and prevent preterm birth and improve care for babies born prematurely.

After its publication, a group of health care professionals came together in a roundtable session, “Preterm Infants: A Collaborative Approach to Specialized Care,” to discuss the implications of the report. The following article captures the group’s April 2007 discussion about the clinical and societal problems of preterm birth. It should be of interest to hospital administrators, pediatricians, third-party payers, policy makers, public health officials, academic researchers, funding agencies, allied health professionals, and others with a vested interest in curbing healthcare costs as well as what needs to be understood and done to safeguard the short- and long-term health of a most vulnerable population. Read the full report. (PDF)

 

Study on Gravely Ill Newborns



Study finds poor communication between doctors, parents of gravely ill newborns. One of the most anguishing moments for parents is deciding on a course of action -- or non-action -- when their baby is born extremely prematurely or with potentially fatal or disabling problems. Read more about steps professionals can take to improve the communication needed during this critical time.

 

Ongoing training for NICU Professionals

 


NICUniversity provides neonatologists and other members of the professional neonatology community with continuing education credits, as well as cutting edge neonatology research and information.  To learn more, visit http://www.nicuniversity.org/


 
Breastfeeding
Information about breastfeeding in the NICU and beyond

 

La Leche League International (Resources for Breastfeeding Preemies)

What Are LLLI Resources For Breastfeeding My Pre-Term Baby?
A pre-term baby is a baby that was born prior to the 37th week of gestation. They may range from extremely low birth weight to low birth weight. Each baby will face entirely different issues. This list of resources is intended to lead you to information for your particular situation.

Begin your search by contacting an LLL Leader in your area. She will help you sort through all these resources and more. To find a Leader near you use these options:

 

Additional articles, FAQs, resources, and information for mothers of breastfeeding preemies available on the LLLI website.

 

Preemie Breastfeeding Resources



The following links provided by Stanford Medical School may be helpful to mothers of preemies who wish to breastfeed:

 

Pumping Breast Milk for Preemies More Effectively

 

 

 

 

 

 

 

Mothers of premature infants shouldn’t rely solely on breast pumps to establish and maintain their breast milk supply, researchers at Lucile Packard Children’s hospital and the Stanford University School of Medicine have found. Moms already have a simple, safe and free tool for assisting breast milk production: their own hands. Read more about this technique.

 

Breastfeeding Booklet



MOST offers a wonderful booklet on breastfeeding multiples and premature infants. Learn more about this great resource.

 

 

 

Frequently Asked Questions about Breastfeeding Premature Babies



MOST has a complete list of frequently asked questions on breastfeeding premature multiples on the Breastfeeding FAQ page today.

 

 
Family and Friends of Preemies
Resources for grandparents, friends, and volunteers, as well information about gifts, showers, and more.

 

NICU Care Packages



Graham's Foundation is a 501(c)(3) non-profit that provides care packages to parents of micro-preemie babies. The purpose of Graham's Foundation is to support the parents of micro-preemie babies by providing care packages that are both practical and inspirational. Their goal is to be an approved resource in every Level 3 and 4 NICU in the United States and deliver at least one care package to each of those NICUs in a calendar year. See the Graham's Foundation website to request a packet or help with this mission.

 

Preemie Book

 

 

There's a new book out on the market - great for young children who were preemies. http://www.littleharpergrace.com/

 

 

 

 
Emotions and Stress
Post-partum depression, marital stress, and more

Parental Reactions to the NICU



The Healthychildren.org Web site is designed for families seeking child and adolescent health information consistent with the American Academy of Pediatrics' (AAP's) policies and guidelines. The site contains information on more than 300 topics compiled from AAP parenting books, patient-education materials, and fact sheets. The site also contains a variety of resources for parents of preemies including these that focus on parental reactions to the NICU.

 

Post Partum Depression Resources

See the MOST list of outside resources on Post Partum Depression

 

Parental Stress Associated with Preterm Infants

About the author: Michael T. Hynan, Ph.D. is a professor at the University of Wisconsin-Milwauke. His research focuses on understanding the stress reactions of parents who have delivered a high-risk baby.

 

Postpartum Dads

Postpartum Dads is a support group helping families overcome postpartum depression (PPD) by addressing the needs of men whose wives suffer from PPD.

Fathers Coordinator: David Klinker
Phone: 408 268-1098
info@postpartumdads.org

 
Bereavement
Resources and information for parents and family members associated with the loss of a preemie.

 

Online Bereavement Resources



Visit the MOST list of outside resources on bereavement.

 
Discharge Planning
What parents needs to know before taking home their preemie(s)

NICU Discharge Resources

 



The Healthychildren.org Web site is designed for families seeking child and adolescent health information consistent with the American Academy of Pediatrics' (AAP's) policies and guidelines. The site contains information on more than 300 topics compiled from AAP parenting books, patient-education materials, and fact sheets. The site also contains a variety of resources for parents of preemies including these that focus on discharge planning.

 

Car Seat Information for Preemies after Discharge

A new clinical report from the American Academy of Pediatrics (AAP), published in the May issue of the journal Pediatrics, finds that proper selection and use of car seats or car beds are important for the safe transport of preterm babies. The report, "Safe Transportation of Preterm and Low Birth Weight Infants at Hospital Discharge," provides safe transportation guidelines for pediatricians and caregivers counseling the parents of preterm babies. The report recommends that preterm and low birth weight infants at risk for cardio-respiratory problems or apnea episodes should have a period of observation by trained hospital staff of 90 to 120 minutes in a car safety seat before hospital discharge. Parents should be advised that car safety seats should be used only for travel and in a rear-facing position in the back seat.  Download the complete report (PDF)

 

Discharge Planning Checklist

 

Going Home – A Parent’s Checklist: Download PDF now

 

 

 
Preemie Development
Developmental milestones, adjusted age, early intervention, and special education programs, etc.

 

Milestones for Preemies



The HealthyChildren.org website provides a list of important milestones – or achievements – in a child’s growth, so you know what to watch for at each age. For example, typical milestones for babies are: “makes eye contact and smiles” and “rolls from tummy onto back”. It is important to remember that development is not a race. Babies develop at their own speed and in their own way. Some children do not reach every milestone at the same time. This is especially true if they were born early. Corrected Age For Preemies

 

Information about Low Birth Weight

The Ottawa Coalition for the Prevention of Low Birth Weight - promotes healthy births by increasing awareness of the impact of low birth weight on babies, their families and communities, the factors that contribute to low birth weight and the steps that can be taken to reduce its incidence. http://www.successby6ottawa.ca/lbwfpn/english/

 

Developmental Milestones

 

 

 

 

 

 

 

PreemieCare offers a FREE developmental milestones chart on the MOST/PreemieCare website.  In addition to the milestones chart on the MOST/PreemieCare site, below are a few other sites that offer information on developmental milestones:

 

Resources for Special Needs Children

See the MOST list of outside resources for children with special health or educational needs.

 

Free Growth Charts



MOST/PreemieCare offer several CDC growth charts. These charts can be used for both term and preterm children, and are the latest pediatric growth charts issued by the Center for Disease Control. The Center for Disease Control (CDC) Growth Charts are the standard for monitoring children's physical growth during pediatric visits.

 

 

Early Intervention FAQ and Resources



MOST/PreemieCare has put together a list of frequently asked questions on early childhood intervention. Visit the MOST FAQ on Developmental Delays for vital information on this parenting resource.

To find the Early Intervention program and other resources for children in your area, visit any one of the following sources:

 
 
Preemie Inspirations
Poems, letters, quotes, and other inspirational material related to premature babies

 

Preemie Prayer Cards

 

The Ukok's Place blog offers a variety of prayer cards, including one for preemies. Use them in your CCD/Catechism classes, RCIA or just print them off and maybe even laminate them to keep as precious keepsakes or to give as gifts!
Scroll down to find Preemie Prayer Cards.

 

 

 

 

A Preemie and Her Mom are Truly Miracles

Barbara Gibbs reconnects with miracle family. A young woman with cystic fibrosis, survived childbirth and a double-lung transplant, then just when things start looking up tragedy struck in the form of cancer. See video: http://abclocal.go.com/wtvd/story?section=news/local&id=6617635

 

 

The Preemie Ring - Share Your Story


The Preemie Ring
was launched February 1997 and is a collection of home pages about premature infants and premature infant care, etc. Some preemies in the ring were born about 4 months early weighing less than 2 pounds at birth! All non-commercial web sites about premature infants are welcome.  Read other’s sites or add your own blog or website about your preemie.

 

Inspirational Poems About Preemies

 

 

 

 

 

 

 

You can't imagine

Welcome to Holland

God's Child

Describing A Hero

Why I'm Glad I Had a Preemie

Preemie Purple Heart

In The Palm Of My Hand

Blessings in Disguise

Heaven Scent

Time

Faith

Look On The Sunny Side

Lessons From Geese

Be!

 

Holiday Preemie Inspirations

 

 

 

Jolly Old St. NICU

 

 

 
Home and Respite Care
Resources for home nursing, respite, and other post-discharge care for preemies

What Do Families Say About Home Nursing?

Aaron BissellInformation Provided by Aaron's Tracheostomy Page

A PreemieCare Spotlight Group Resource

"If they lose this job, they can move on. If we lose our child, we don't move on as well."
Major Areas of Parent Concerns

  • Loss of Privacy
  • Inexperience / Lack of Training
  • Boundaries
  • Empathy / Respect
  • Documentation Issue

 

Loss of Privacy

Some loss of privacy is unavoidable when you have someone in your home caring for your child. If nurses are able to keep this invasion of privacy to a minimum, it is helpful to parents.

"Privacy, What's that?"

"When you have a child with complex medical issues, it's like living in a fishbowl."

"People with so-called healthy or normal children have to deal with criticism and second-guessing, but we deal with 100x that amount. We have doctors, nurses, the state, teachers, social workers, (in some cases the courts-ugh), as well as the typical well-meaning (or in some cases, condescending) person to question our judgment."

"I think most families resent the intrusion of a nurse to some degree. It's partly due to the fact that they just wish they weren't in a situation that requires nursing care to begin with. For the most part I don't think it's personal with the nurse. It's just the situation."

"No matter how wonderful they as nurses, their very presence in the home is often a significant source of stress."

"A nurse is absolutely an essential member of some children's home life-but not a member of the family who cannot be replaced."

"From the moment of our child's birth (which was a horrifying, sad, anxious, and not very joyous) until this very moment, we have had people scrutinize and judge us in ways that others will go a lifetime without experiencing."

"Sometimes even having a nurse in your home makes me feel incompetent . . . that I can't take care of my child myself."

"Everyone knows everything that is going on in our life, everyone has an opinion or is passing judgment about our life. I feel like everything I do is constantly scrutinized and I don't feel comfortable with my life anymore."

 

Inexperience / Lack of Training

Nurses sent to their home with little or no training in tracheostomy care and/or ventilator care. Sleeping on the job was a major compliant for parents using night nurses.

"If you don't understand something, ask before you just go ahead and try something new."

"I hate having to wake the nurse up when an alarm is going off. I don't sleep well when some nurses are working."

"The nurse suctions too deep, doesn't seem to listen to me about technique."

"If we ask that something be done faster/slower/gentler/stricter/whatever, as long as it is not going to hurt the child, does it hurt to do it? Nurses need to do their very best to not cause stress."

"I do all the orientation myself because I want them to learn the way we prefer it done, and I don't want them to pick up another nurse's bad habits."

"STAY AWAKE!!!! That was our biggest problem with night nurses. We found few who could actually stay awake the entire shift. Night shift is tough."

 

Boundaries

This area of concern is highly individualized. Some parents welcome nurses and over time, they feel the nurses are close friends or even like one of the family. Other parents prefer to keep a distant professional relationship. Personalities of the parents and the nurse play a role here.

"Each family is different. What worked with case number 2 may not work with case number 18. No family is the same, and certainly no child is the same."

"I think the nurses need to see their role as the family assistant. They need to help in whatever way best suits each family they work with."

"We cannot be a 'normal' family with nurses in the home. I live with my wife because I love her... I live with a nurse because I HAVE to... I chose to live with my wife. I am forced to live with a nurse."

"Any stranger touching my child is an invasion - we parents tend to be very over-protective over our sick children."

"The best nurses would say that we knew our baby better than they did, so they wanted to know how we wanted things done, what the baby likes and what toys were his favorites."

"Please don't move things - I can't find them when you are gone. You may not like my system, but please try to respect it."

"I don't really need to hear about all your problems. I'm in crisis myself."

"I can suggest keeping the relationship with nurses more professional then personal."

 

Empathy / Respect

It is helpful when nurses understand that parents of medically fragile children are under a tremendous amount of stress. Parents may also be at different stages of the grieving process. Parents appreciate respect for their family and their home.

"To admit that we need help is tough."

"Some nurses were unfriendly, and thought that some of the things we asked for (like wearing gloves while suctioning) were over doing it. They did not care or have an understanding of what we just went through."

"It is nice when they sort of put themselves into our shoes and act on that. It is nice when they care. Like it or not, they do become a part of the family, so when they feel that way too, it is a blessing."

"Respect my knowledge of the child's condition and care. Respect the fact that this is my home and my child's home. Respect the fact that this child, your patient, is not the only member of this family. Respect my privacy."

"If the nurses totally sympathize with you and make sure they take care of your child as they would their own, then you feel happy and comfortable."

"The best nurses shared our tears when our son was dying, and they shared our happiness and laughter, when he was doing great. They held us when we cried and made us laugh when days were good."

 

Documentation Issues

Inappropriate or inaccurate information documented in the chart by nurses that included personal information that was unnecessary, bias or judgmental.

Actual quotes from Nurses Notes:

      • "Child uncooperative for diaper change" (child was only 3 months old)
      • "Family watched Seinfeld and Jeopardy"
      • "Family went to Mall, bought clothes"
      • "Mother had ten minute phone call. Argued on phone. Upset by call."
      • "Father out most of evening, whereabouts unknown."

 

 

 

 

 

 

 

 

Emergency Release Form



Download your FREE copy of the MOST Emergency Release Form.

 

 

 

 

National Respite Locator Service




The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs. Please give us your feedback. Let me know if you have any problems with this service, or if you find that a listing is out of date or no longer providing respite care.

 
Preemie Products
Car seats, medical equipment, clothing, and more.

Preemie Store

Parents of preemies can find a variety of products such as parenting booklets, articles, infant clothing, nursery items, and much more in the MOST Supertwins Store: Preemie Shop. Visit us today!

 
Finances and Insurance
Tips and resources to help families address the medical costs and insurance claims for their preemies

Communicating with your Insurance Company

 

 

 

 

 

 

 


Information Provided by Preemies Today A PreemieCare Spotlight Group Resource

You have the power to pursue all available ways to obtain appropriate coverage through your health plan. Taking charge of your health care needs, being familiar with your benefits, and communicating with your plan and employer give you the best opportunity to obtain coverage of appropriate and necessary medical care.

Insurance Resources

Having a preemie also means you will be learning a lot about insurance and paperwork. Although each parent will need to work with their own insurance company to determine available coverage, we have gathered some tips from parents who have had gained experience while working out insurance payments.

The common theme: keep track of the paperwork and always call if you have questions! You would think that parents of preemies would get a break when bringing home their baby from the hospital it’s not always so! In addition to the medicines, the equipment, the doctor appointments, and oh yeah, the regular baby stuff, you realize you are in the middle of an insurance fight. Just because the hospital is listed as a participating provider in your plan, doesn’t mean that all sections of the hospital are automatically covered under it. Like most preemie parents, you didn’t exactly have time to discuss this upon check-in, right? Right. We’ve been there.

So begins the many phone calls to the insurance company, the various contracted providers that treated you and/or your child in the hospital. And then the dread of seeing what large medical bills showed up in today’s mail. Sound familiar?

So what’s a preemie parent to do?

Plenty. While the road to getting all of this resolved has the potential to be long and frustrating and often feel like a second job, you do have rights and you do have people on your side despite what you might at first think.

Here are some quick tips to getting through the confusion:

  1. Breathe In, Breathe Out. Repeat!

    Take a deep breath and realize that you are not alone and that you will get through this. Some cases can take up to a year to be totally resolved. Just take it one step at a time.
  2. Get Organized

    First off, invest in a simple school notebook so you can keep notes on everything as it progresses. Second, get a large envelope or a set of manila folders so you can divide up the insurance Explanation of Benefits by provider and organize from there. Third, in the inside front cover of the notebook, write up a list of the various providers, their phone numbers, their addresses, and their office hours. Fourth, make copies of your and your child’s insurance cards. Doing all of this can save you a lot of time and aggravation.
  3. Professionalism and Making a Friend Here and There

    You are going to be getting to know a few people during this process your providers (the people you and/or your insurance company owe money to), the insurance company (the customer service team to the appeals team). The providers are your friends, believe it or not. They want to make sure their company gets that big check so chances are that they have not only been through this before with other patients but also they may have some sort of template appeals letter they can provide to you. At the very least you will get to know them and they will get to know you. All conversations with the provider should be polite and professional. Make sure that as you update your notebook with notes on conversations with the insurance company, etc. that you are doing the same by updating the provider in question. That way you become less of an account number and more of a human being.

    The insurance company on the other hand, will do its best to confuse the life out of you. Every time you call into the customer service department, be prepared to wait on hold for a bit (if you have a speakerphone at home or work, use it!) Use this time to prepare your set of questions, collect all documents necessary to the subject at hand, etc.

    That way when you do talk to a representative, you are ready to go. If you are calling to question the way a claim was handled, simply ask them to go over the claim in detail with you. After all you are the customer, they should be telling you what they did and not vice versa.
  4. Take Notes

    This is very important. Take notes on each and every phone call and make sure to include the date, time and the person you spoke to (ask for full name and be clear you need a correct spelling of the name). That is where your notebook comes in real handy. That way all notes stay in one place and you have a chronological log of all discussions.

    What this will do is help you work through the confusion of the insurance company. Yes, they want you to get confused and to just give up. That is what they are hoping for. Don’t give up!
  5. Persistence Pays Off

    You have the right to challenge a denied claim, so if a simple phone call to the insurance company won’t work then move onto writing an appeal letter. Again these letters may already be on hand through your doctor’s office. Give them a call to check and see if they could assist you with the letter. Along with the letter itself, make sure to reference any and all claim numbers and to also provide copies of the Explanation of Benefits for each.

 

Legal and Advocacy Services for Children with Disabilities

Health & Disability Advocates (HDA) is a national organization, based in Chicago, Illinois, that uses multiple strategies to promote income security and improve healthcare access and services for children, people with disabilities and low-income, older adults.

HDA’s team of legal and policy experts provides a range of services including individual client services and legal representation, and customized trainings and technical assistance for a range of audiences, including consumers, service providers and state agencies.

They also conduct projects and produce policies to protect and strengthen federal and state safety-net programs including Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicare and Medicaid.

 

Mortgage Assistance Programs

Foreclosure Avoidance Counseling  - HUD-approved housing counseling agencies are available to provide you with the information and assistance you need to avoid foreclosure.

 

As part of President Obama's comprehensive Homeowner Affordability and Stability Plan (HASP), you may be eligible for a special Making Home Affordable loan modification or refinance, to reduce your monthly payments and help you keep your home. Find resources in your state for the Foreclosure Avoidance Counseling program

 

Making Home Affordable Program  - Are You Eligible?  Please use the self-assessment tools provided on this website to see if you are among the 7 to 9 million homeowners who may be able to benefit from Making Home Affordable.

Refinancing - Many homeowners pay their mortgages on time but are not able to refinance to take advantage of today’s lower mortgage rates perhaps due to a decrease in the value of their home.

Modification - Many homeowners are struggling to make their monthly mortgage payments perhaps because their interest rate has increased or they have less income.

 

State Children’s Health Insurance Programs and Medicaid

 

 

 

 

 

 

 


State CHIP programs:

Qualifying for Medicaid:

 

Applying for Social Security Benefits

Apply for Disability Benefits - Children Under 18

To apply for disability benefits for a child, you will need to complete an Application for Supplemental Security Income (SSI) AND a Child Disability Report. The report collects information about the child’s disabling condition and how it affects his/her ability to function.


At this time, only the Child Disability Report can be completed online. Please contact us to schedule an appointment to complete the SSI application. We will help you in person or by phone.

To apply, follow these steps:

  • Step 1. Review the Child Disability Starter Kit. This kit answers common questions about applying for Supplemental Security Income (SSI) benefits for children, and includes a worksheet that will help you gather the information you need.
  • Step 2. Contact Social Security right away to find out whether the income and resources of the parents and the child are within the allowed limits, and to start the SSI application process.
  • Step 3. Fill out the online Child Disability Report. At the end of the report, we will ask you to sign a form that gives the child's doctor(s) permission to give us information about his/her disability. We need this information so that we can make a decision on the child’s claim.

Note: If you previously started a Child Disability Report but did not finish it, you can use your re-entry number to return to your online Child Disability Report.

Contacting Social Security
If you do not want to do this report online or you need help, you can call us toll-free at 1-800-772-1213. If you are deaf or hard-of-hearing, call our toll-free TTY number, 1-800-325-0778. Representatives are available Monday through Friday between 7 a.m. and 7 p.m.

 

Applying for Food Stamps/SNAP/WIC Programs

 

 

 

 

 

 

 

SNAP (Food Stamps) - First look into the Supplemental Nutrition Assistance Program. Here is a list of state hotlines for the SNAP (formerly known as Food Stamps) program.

WIC (Women Infants and Children) - Also check out the WIC Program at the Federal level; State agencies are responsible for determining participant eligibility and providing benefits and services, and for authorizing vendors. To apply to be a WIC participant, you will need to contact your State or local agency to set up an appointment. Check out your State's website or call the toll-free number. When you call to set up an appointment, someone will tell you the location nearest your home and what you need to bring with you.

 

State-by-State Resources for the Uninsured/Underinsured

Guides to Finding Health Insurance Coverage in Your State Click on your state for a guide to finding health insurance coverage. These guides are available in pdf format. Adobe Reader is required.  En Español

 

Library of Links of Financial Resources

MCH Library Financial Resources - MCH Library Knowledge Path on locating resources for financial assistance. The MCH (maternal and child health) Library is a virtual guide to MCH information. It offers a combination of MCH information compiled by library staff and pathways to the best MCH information available on other Web sites, from organizations, and in libraries.  http://www.mchlibrary.info/KnowledgePaths/kp_community.html#Financial

 

Financial Assistance for Prescription Medications

 

 

 

 

 

 

 



The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Many will get them free or nearly free. Its mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669). https://www.pparx.org/Intro.php

NeedyMeds.org

NeedyMeds is a 501(3)(c) non-profit with the mission of helping people who cannot afford medicine or healthcare costs. The information at NeedyMeds is available anonymously and free of charge.
NeedyMeds, Inc
P.O. Box 219; Gloucester, MA 01931
info@needymeds.com
http://www.needymeds.org/index.shtml

 


Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.

Volunteers in Health Care
111 Brewster Street; Pawtucket, RI 02860
Phone: 401-729-3284
Fax: 401-729-2955
info@rxassist.org
http://www.rxassist.org/

 

Resource Directory for Under/Uninsured in NY

The Health Information Tool for Empowerment (HITE) is an online directory of health and social services specifically for low-income, uninsured and under-insured New Yorkers. With the click of a mouse, HITE allows professionals to link their underserved clients with a broad array of health and support services. HITE was developed by the Greater New York Hospital Foundation, and made possible with funding from the Robert Wood Johnson Foundation, W.K. Kellogg Foundation, the Langeloth  Foundation, the Aetna Foundation and others.  Read more about what HITE has to offer.

 

Grant Money for Children's Medical Expenses

 

 

 

 

 

 

 



The United Healthcare Children's Foundation http://uhccf.org/apply_applicant.html has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans. UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics, and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 each for child medical services and equipment by completing an online application at the UHCCF Web site. To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States, and be covered by a commercial health benefit plan.

 

Advocacy, Financial Help, and Insurance Resources

 

 

 

 

 

 

 



Need help for high out of pocket costs, are you uninsured, or is your insurance not enough? These groups may be able to help.

The Patient Access Network Foundation is a non-profit 501(c)(3) organization dedicated to supporting the needs of patients that cannot access the treatments they need due to out-of-pocket health care costs. Contact the Patient Access Network Foundation at PO Box 221858; Charlotte NC 28222-1858, call 1-866-316-PANF (7263) or email at contact@patientaccessnetwork.org. The Patient Access Network has funds for more than 20 medical conditions including RSV Prevention and Treatment, Cystic Fybrosis, Growth Hormone Deficiency, some cancers, and more.

Covering Kids & Families – Their statewide coalitions work with public officials, health professionals, educators, businesses, social service agencies and faith-based organizations to design and implement strategies to simplify enrollment processes and renewal processes for SCHIP and Medicaid. They will help you find resources on low-cost or free medical services in your state. For more information, call 1-877-KIDS-NOW.

The Individual Cancer Assistance Network (ICAN) – This network provides a chance for cancer patients and their families to deal with cancer-caused stress by meeting with a counselor for up to six one-on-one counseling sessions. No health insurance is needed to take advantage of ICAN counseling. People pay only what they can afford to pay. Cancer patients or their family members can call 1-866-359-ICAN.

The National Center for Policy Analysis – The National Center for Policy Analysis has done a study on how to lower your prescription drug costs. The study includes information on pill splitting, generic drugs and financial assistance to lower drug cost.

The Center for Patient Advocacy – This is a grass roots organization that works to ensure patients have timely

access to the highest quality health care in the world. They are a diverse, nationwide coalition with a wealth of information on patient rights. This site includes information on patient dumping laws – refusing emergency care for lack of insurance.

 

How to Appeal a Decision From Your Insurance Company


You have the power to pursue all available ways to obtain appropriate coverage through your health plan. Taking charge of your health care needs, being familiar with your benefits, and communicating with your plan and employer give you the best opportunity to obtain coverage of appropriate and necessary medical care. Although following these suggestions does not guarantee your health plan will cover all of your health care treatments, understanding your coverage and benefits will allow you to know that you have done everything you can to use your health insurance properly.


These tips will help you communicate effectively with your health plan:

  • Be confident. You have the right to obtain complete information about your health benefits. Your insurance plan’s customer service representatives and human resource departments are there to help you. Their job includes answering questions about your benefits.
 
  • Speak clearly and calmly. Remember that your goal is to gain coverage for your health care treatments. If you feel you have been misunderstood, calmly restate your request.
 
  • Become an educated healthcare consumer. This allows you to be able to better advocate for your needs. Learn as much as you can about the illness, disease, disorder or disability that is affecting you or your loved one. This should include prevention of, care during crisis and long term affects.
    Find out the latest recommendations on your issue. Use appropriate national medical academies such as
    AAP - American Academy of Pediatrics or ACOG - American Academy of Obstetrics and Gynecology
 
  • Know your benefits through your employer. This is an important step and the means by which to appeal a decision from an insurance company if that is necessary but it is also important to understand the medical necessity behind your request. From a dispassionate perspective clearly relate all of the logical reasons why your request should be granted from both a healthcare and business perspective. Then passionately speak to why this is important to you as a patient (or parent of), employee, the insured.
 
  • If at first you don’t succeed, move up the ladder. When moving up the ladder in your appeal process ask what medical background the individual has who will be making the final decision (if the person has a wonderfully strong background in orthopedics this may not be all that helpful to you if you need help with an OB/GYN issue). Specifically request, in writing, the type of specialist you'd like to review the appeal. This may be a great opportunity for you to educate the insurance company and those making these important decisions by providing the background information and medical journal articles that you have found helpful. (You may also want to consider sharing this information with your employer.) If you have discussed your request with your health plan’s customer service representative and are not satisfied with how the issue is being handled, ask to speak to:
     
    • A Supervisor in the Customer Service Department
    • The Manager or Director of Customer Service or Member Services
  •  
  • Know your benefits. Health insurance can be complex. Be sure you know your policy’s benefits. They may be explained for you in your policy handbook or health plan website. If you do not understand something, ask your health plan’s customer service representative or your employer’s benefits administrator.
 
  • Document your communications. Keep detailed, written records of each conversation you have with your health plan and your employer.
    1. Record the date of the conversation and the full name of the representative.
    2. Make notes of all information that you received.
    3. Keep copies of all written correspondence
  • Ask for help. Your physician can be a great source of help. Having your physician call or write your health plan can be helpful since he or she can explain why the treatments are needed for your child’s health. In many cases, your employer makes decisions about what will be covered under your health plan. You can help to educate your employer and encourage more appropriate medical coverage decisions by having your physician communicate directly with the company. Your physician should ideally cc your company when writing to your insurer on your behalf and be sure if at all possible to get a copy of this letter for your records.
 
  • Be persistent. A denial is not necessarily the last word. Each health insurance plan may have several levels of appeal. Ask your health plan to reconsider its decision and follow up with the insurance company to make sure action occurs. It may take several attempts before your appeal reaches the people responsible for establishing treatment policies.
 
  • Use the variety of resources. If you are unsure of your benefits and need additional assistance in appealing your coverage, many pharmaceutical and biotechnology companies have detailed websites for their products and may also offer a hotline that can assist you in seeking coverage.
 
Preemie Legislation
We post information about pending or current legislation that may affect preemie families here.

 

2009 US Health Care Reform Package

On December 24th the US Senate voted to approve a health reform bill, the Patient Protection and Affordable Care Act. The bill is estimated to provide health coverage to nearly 30 million uninsured Americans and includes extensive new health insurance regulations. The full text of the legislation is available online.

The Association of Maternal and Child Health Programs (AMCHP) has created a summary of key maternal and child health-related provisions in the bill. This information can be accessed here.

Several additional maternal and child health-related provisions were added in the final days of Senate debate on the legislation. These provisions were part of a package known as the Manager’s Amendment and included details on the Senate’s vision for the future of the Children’s Health Insurance Program (CHIP). Access the text of the Manager’s Amendment here.

 

 

IDEA Part C (Early Intervention) April 2009

 

 

 

 

 

 

 

 



The Early Intervention Family Alliance (EIFA) is a national group of family leaders dedicated to improving outcomes for infants and toddlers with disabilities and their families. The EIFA represents family leaders’ involved in Part C programs in states and other jurisdictions implementing the Individuals with Disabilities Education Act (IDEA) Part C for infants and toddlers with or at risk for developmental delays and disabilities and their families.

The EIFA is excited that the American Recovery and Reinvestment Act includes monies dedicated to stabilizing and stimulating job growth in this important program. However, they are concerned by some trends they have observed.

Learn more about this important legislation:

 

 

Zero to Three's Database of State Policies & Initiatives

 



Baby Matters: A Gateway to State Policies and Initiatives

Baby Matters is a searchable database that contains resource information on state policies and initiatives that impact infants, toddlers and their families. The policies and initiatives are searchable by category, state, or keyword. A detailed description of each policy or initiative is provided, as well as links to additional related resources.

The policies and initiatives presented in Baby Matters are categorized by the elements of the ZERO TO THREE Policy Center's Infant & Toddler Policy Framework. Our framework focuses on key strategies across four main areas known to impact the healthy development of infants and toddlers:

  • Good Health
    • Physical Health
    • Social and Emotional Health
    • Developmental Screening
  • Strong Families
    • Basic Needs
    • Parent Education
    • Home Visiting
    • Child Welfare
    • Family Leave
  • Positive Early Learning Experiences
    • Child Care
    • Early Head Start
    • Early Intervention
  • System
    • Governance/Leadership
    • Quality Improvement
    • Accountability and Evaluation
    • Financing
    • Public Engagement and Political Will Building
    • Regulations and Standards
    • Professional Development

The information presented in Baby Matters is gathered from a variety of sources, including (but not limited to): ZERO TO THREE Policy Center publications; state policy updates featured in The Baby Monitor, the ZERO TO THREE Policy Network's e-newsletter; and state data collected by the National Infant & Toddler Child Care Initiative @ ZERO TO THREE. Please note that the nature and detail of the entries vary due to the diverse sources of information used in the database.

The database (
http://policy.db.zerotothree.org/policyp/home.aspx) is updated on a regular basis. If you find inaccurate information or are aware of a new state policy or initiative that impacts infants, toddlers and their families, please email us at policycenter@zerotothree.org.

 

 

 

The PREEMIE Act (December 2006)

 

Congress has responded to the growing crisis of premature births by approving a bill that will increase federal support for research and education on prematurity. This bill, called the PREEMIE Act (S.707), was approved on December 9, 2006.

Premature birth is a serious and, unfortunately, too common problem facing America's infants. Premature birth (birth occurring before the 37th week of gestation) is found to account for 12 percent of births in the United States. It is also one of the leading causes of infant deaths in our country. Besides the demanding physical hardships faced by the parents of these premature children, there is great emotional as well as financial strain.

The purpose of the PREEMIE Act is to:

  1. Reduce rates of preterm labor and delivery
  2. Work toward an evidence-based standard of care for pregnant women at risk of preterm labor or other serious complications, and for infants born preterm and at a low birth weight
  3. Reduce infant mortality and disabilities caused by prematurity

The PREEMIE Act will ensure that research relating to preterm labor and delivery and the care, treatment, and outcomes of preterm and low birth weight infants will be conducted. It will increase public and health care provider education and support services by establishing programs to:

  1. Test and evaluate various strategies to provide information and education to health professionals, other health care providers, and the public concerning:
    1. the signs of preterm labor, updated as new research results become available
    2. the screening for and the treating of infections
    3. counseling on optimal weight and good nutrition, including folic acid
    4. smoking cessation education and counseling
    5. stress management
    6. appropriate prenatal care
  2. Improve the treatment and outcomes for babies born premature, including the use of evidence-based standards of care by health care professionals for pregnant women at risk of preterm labor or other serious complications and for infants born preterm and at a low birth weight
  3. Respond to the informational needs of families during the infant's stay in a neonatal intensive care unit, during the transition of the infant to the home, and in the event of a newborn death

More information on the PREEMIE Act

PreemieCare
P.O. Box 306
(631) 859-1110
East Islip, NY 11730
info@preemiecare.org