Families Page Archive

Support Group Search by the National Perinatal Association

The National Perinatal Association (NPA) developed a catalog of Family Advocacy Networks that is searchable by specific group, type of program (e.g. preemie support, grief/bereavement, emotional support), and by state. If you are looking for a particular support network, check out the NPA list.

Support Networks »

text4baby.org

Text4Baby is a new program that was launched by National Healthy Mothers, Healthy Babies Coalition (HMHB) in order to help pregnant women and new moms get information about caring for their health and thus giving their babies the best start in life. This is a free health text messaging service (even if you don't have a texting plan). It's available in English and Spanish.

For more information or to sign up, please go to: www.text4baby.org »

Secondhand Smoke Exposure and Risk of Neurobehavioral Problems in Kids

The health consequences of secondhand smoke exposure have been well documented in both adults and children. Recently a group of investigators used U.S. data from the 2007 National Survey on Children's Health in order to explore the link between neurobehavioral disorders in children below the age of 12 and secondhand smoke exposure. Those children who were exposed to secondhand smoke at home were identified to have a greater risk of having two or more nuerobehavioral problems (i.e. learning disabilities, conduct disorders, and attention-deficit/hyperactivity disorders).

Secondhand Smoke Exposure and Neurobehavioral Disorders
Among Children in the United States »

Child Passenger Safety

In April 2011, the American Academy of Pediatrics (AAP) released its most updated technical report on Child Passenger Safety.The biggest change in the guidelines is that a child should remain in a rear-facing seat until two years of age. Additional information is also available through the AAP website. The installation of a car seat can be challenging, and studies show that most are not installed properly. Many communities have programs in place to help install car and toddler seats safely. You can contact your local police station or visit one of the websites below for more information.

www.seatcheck.org »
http://cert.safekids.org »
National Highway Transportation Administration »

Hand to Hold

Supporting Moms with Post Traumatic Stress Disorder

Among the least-known tragedies of prematurity are the estimated 76% of moms who experience post-traumatic stress disorder (PTSD) after a baby's neonatal ICU stay, with far-reaching consequences for families and communities. But a new nonprofit organization is addressing the unmet need for community-based peer support, which studies suggest can cut this statistic in half. Hand to Hold - whose pilot program based in Austin, TX will serve as a national model - provides resources and support programs to parents of preemies, babies born with special healthcare needs and those who have experienced a loss.

Founded by a mother of preemies, Hand to Hold focuses on empowering parents to advocate for their children; encouraging counseling when needed; providing resources and information for managing insurance and financial issues; educating parents about the challenges their babies may face and preparing them to meet those needs; and sharing the resources and support necessary to help all children enjoy a full and satisfying life.

Hand to Hold website »

Donor Breast Milk Use in the NICU

Submitted by: Tina Steele and Karen Puopolo

Breast milk feeding is the optimal form of nutrition for infants born prematurely. For the tiniest infants, breast milk can be literally lifesaving by conferring protection from both bloodstream infections and from necrotizing enterocolitis, a potentially devastating intestinal complication of prematurity.

Providing breast milk to premature infants can be challenging. Many mothers are sick or recovering from emergent surgeries, severe blood loss and medical conditions. For these reasons, pasteurized, banked donor human milk can provide an important alternative to premature formulas. Brigham and Women's Hospital in Boston started a Banked Donor Milk Program and approximately 65 infants have received Donor Milk since.

Donor Breast Milk Use in the NICU full text »

Severe Combined Immunodeficiency, X-Linked (SCID-X1), "Bubble Boy Disease"

"Bubble boy disease," formally known as severe combined immunodeficiency disease (SCID), is now part of national U.S. Newborn screening guidelines, adopted by Secretary of Health and Human Services Kathleen Sebelius last month. SCID was named for David Vetter, a Texas boy who spent his short life inside a sterile plastic cocoon to avoid infections. Read the full text of the article »

On the treatment front, investigators at Children's Hospital Boston have launched a new gene-therapy trial for children with the "bubble boy syndrome," reflecting fresh hopes that the strategy of delivering working genes can be used to treat many intractable ailments. Without treatment, which is currently possible only by bone-marrow transplantation, most children die before age one.

In this new SCID-X1 trial, researchers will take stem cells from a patient's own bone marrow, deliver a functioning gene into those cells in the lab and then infuse them back into the patient. If all goes well, the cells will start producing a protein that will multiply and provide a functioning immune system. Read the full text of the article »

Why Newborn Screening for Severe Combined Immunodeficiency is Essential: A Case Report »

Sudden Infant Death Syndrome (SIDS)

The loss of a baby as a result of Sudden Infant Death Syndrome (SIDS), formerly known as "crib death", is one of the most devastating losses a family can endure. The cause of SIDS is still not completely understood, however, SIDS deaths most often occur among infants who are below 6 months of age during periods of napping or sleeping. Babies can die of SIDS during daytime naps, when the infant might be cared for outside the home, as well as during overnight sleep. Several care strategies have been identified and have led to reduced rates of SIDS.

The AAP Healthy Child Care America has taken an educational approach to SIDS prevention, recently creating a new online module, Reducing the Risk of SIDS in Child Care! This free course is designed to educate everyone who cares for babies, including child care providers, health care professionals, parents, grandparents, and relatives, regarding what they can do to provent SIDS.

In 1 hour, participants will learn how to create a safe sleep environment to reduce the risk of SIDS and other sleep related deaths. With an easy to use format, this course is available 24/7 from your home or office computer. Child care providers will receive a certificate of completion for 1.0 contact hour. Health care professionals can also receive credit.

For information on how to access this free course »

A Child Care Provider's Guide to Safe Sleep »

A Parents' Guide to Safe Sleep »

Extremely Preterm Infants Might be at Increased Risk of Autism

Autism Spectrum Disorders (ASD) are a group of behavioral and communication disorders, normally affecting about 1 out of 150 children. These disorders, sometimes called "autism" or "pervasive developmental disorder" (PDD) usually are recognized beginning in the toddler years. Five previous studies have shown increased risk of ASD among infants born preterm or at low birth weight. In the April 2009 issue of the Journal of Pediatrics, a Boston researcher (Dr. Karl Kuban) and his colleagues reported a study of babies born before 28 weeks of gestation that showed a much higher than expected rate (21%) on a screening test for autism (M-CHAT) that is administered at age two that did not simply seem to reflect neurological problems. The M-CHAT is a screening test for autism, not a diagnostic one, so these babies will have to be further tested to determine whether they meet criteria for ASD. This is an important study, however, because it makes us aware that even though most infants born very premature won't have autism, they must be evaluated as they grow and develop with the possible increased risk of ASD in mind.

AAP information about autism »

Learn more about the President's plan for autism screening »

A mother's refection on autism »

Babies and Families Love Skin-to-Skin Kangaroo Care!

Once viewed simply as a nice way for babies and parents to cuddle, skin-to-skin contact, also called Kangaroo Care, is now recognized as offering benefits to both babies and their parents. Several recent randomized clinical trials showed Kangaroo Care is associated with improved temperature, more quiet sleep and less time crying as well as improved exclusivity and duration of breastfeeding following discharge. Furthermore, Kangaroo Care has been linked with enhanced breast milk production, improved parent-child relationship, and slightly better test scores on developmental tests at 6 months. Although further studies are needed, this early work suggests that skin-to-skin holding (Kangaroo Care) might offer substantial benefits to babies and mothers.

Chwo MJ, Anderson GC, Good M, Dowling DA, Shiau SH, Chu DM. A randomized controlled trial of early kangaroo care for preterm infants: effects on temperature, weight, behavior, and acuity. Journal of Nursing Research 2002 Jun; 10(2):129-42.

Feldman R, Eidelman AI, Sirota L, Weller A. Comparison of skin-to-skin (kangaroo) and traditional care: parenting outcomes and preterm infant development. Pediatrics 2002 Jul;110:16-26.

> Access this article »

Hake-Brooks SJ, Anderson GC. Kangaroo care and breastfeeding of mother-preterm infant dyads 0-18 months: a randomized, controlled trial. Neonatal Network 2008 May-Jun; 27:151-9

Kostandy RR, Ludington-Hoe SM, Cong X, et al. Kangaroo Care Reduces Crying Response to Pain in Preterm Neonates: Pilot Results. Pain Management Nursing 2008; 9:55-65.

Spanish-Language Site Focuses on Prematurity as Key Issue

The March of Dimes has relaunched its Spanish-language web site nacersano.org to offer up-to-date, doctor-vetted maternal and neonatal health information. Some of the topics covered include staying healthy during pregnancy, labor and delivery, newborn care, and prematurity. Among the new features are Latin American recipes rich in folate, a "Just for Dads" feature, and stories of Latino families related to prematurity and folic acid.

Check out www.nacersano.org »

A New Web Site From the AAP!

HealthyChildren.org is the only parenting Web site backed by 60,000 pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. Whether you're looking for general information related to child health or for more specific guidance on parenting issues, you can rest assured that our information comes from the nation's leading child health experts and that we have scientific research supporting our recommendations.

20 Minutes with Neonatologist, David Adamkin, MD

University of Louisville neonatologist, David Adamkin, has dedicated his career to sick babies, particularly to low and very low birthweight babies, their nutritional needs, and strategies to help them grow and thrive. Kentucky ranks among the highest in the US for low birthweight babies, with about 9 percent of babies weighing less than 5 lbs 8 oz. The smaller a baby is, the greater his risk of neurodevelopmental problems. An expert in infant nutrition, Adamkin has found, through clinical experience and research, that aggressive feeding makes a difference for these babies, especially in the first 2 to 3 weeks after birth. He has outlined his feeding guidelines and strategies in the new book "Nutritional Strategies for the Very Low Birthweight Infant."

Read the full interview with David Adamkin, MD »

Congenital Heart Defect Awareness

"Keeping Little Hearts Healthy" Podcast - In this podcast, Dr Tiffany Colarusso discusses ways to prevent congenital heart defects in newborns.

A Minute of Health (1 minute summary) »

A Cup of Health (6 minute interview) »

CDC Report Finds Variations in NICU Admission
of Very Low Birth Weight Infants

New findings published in CDC's Morbidity and Mortality Weekly Report (MMWR) suggest that there is wide variation among states in the prevalence of NICU admission for infants with very low birth weight (VLBW) - and points to the need to further address state data to identify barriers to NICU admission. The report looked at NICU admissions of VLBW infants in 19 states during 2006. Current standards call for NICU care for all VLBW babies, since it has been shown to reduce mortality for this group. However, just 77.3% of VLBW infants in the study were admitted to NICUs, with some variations by ethnicity.

The report is available on CDC's website. »

Pertussis on the Rise

The country has seen an alarming number of cases of pertussis in recent weeks. Go to Healthy Mothers, Healthy Babies Web site for a "Q&A" and interview with Dr. Ari Brown to address topic and prevention strategies in an easy-to-read format.

Healthy Mothers, Healthy Babies »

Probiotics Reduce Necrotizing Enterocolitis in Preemies

Australian researchers said giving probiotics to preterm, very low birth weight babies reduced the rate of necrotizing enterocolitis by 65%. The data published in Pediatrics agreed with earlier study findings, and researchers said that based on the strong evidence "withholding probiotics from high-risk neonates is now almost unethical."

MedPage Today »

New AAP Immunization Web Site

The AAP is pleased to announce the creation of a new, comprehensive online resource for pediatricians and families that addresses the topic of immunizations. This new site replaces the Childhood Immunization Support Program Web site and contains information about vaccine-preventable diseases, vaccine safety information, and tools and resources to help pediatricians effectively and efficiently administer immunizations in their offices.

Access through the AAP Web site »

Pregnant Women Strongly Urged to Get Flu Shot

(09/21/09) A national coalition of health care and information providers for pregnant women and children have an urgent message for pregnant women concerning influenza. The normal changes of pregnancy place pregnant women at increased risk of the harmful effects of flu infection, and as such, they should take increased precautions.

The joint statement for pregnant women regarding influenza and immunization »

Newborn Intensive Care: What Every Parent Needs to Know

When the birth of a baby does not go perfectly, and a baby is born prematurely or with an illness, parents need answers to all the questions they have about their baby's condition and what will happen in the coming days, weeks and years. This newly-revised guidebook helps parents of premature and sick newborns understand their baby's illness and give them the detailed information they need to make sense of their baby's complicated situation. Editor-in-chief Jeanette Zaichkin, a neonatal nurse and author, describes complex medical issues in a way that people with little or no medical training can understand - without oversimplifying.

How to order»

Program to Enhance the Health and Development of Infants and Children (PEHDIC)

The AAP was awarded the PEHDIC, a 5-year cooperative agreement with the CDC. Primarily housed with the AAP Division of Children with Special Needs, PEHDIC aims to translate critical research and guidelines, focused on preventive health care, continuity of care, and transition to adulthood, into practice as well as to expand provider and public education related to health promotion and disease prevention.

Details about PEHDIC »

Plastics Chemical May Raise Risk of Low Birth Weight

Research found that pregnant women exposed to phtalates, a chemical found in plastics, may have a higher risk of delivering babies with low birth weights. Researchers said they found notable levels of phthalates in cord blood and first stools of more than 70% of infants in the study, with higher levels of the chemical found in babies with low birth weights.

Read the full article »

Whooping Cough is Making a Comeback, Risking Serious Illness or Death Among Newborns

Whooping cough, also known by the medical term pertussis, is a vaccine-preventable disease that is caused by a bacterium (germ). It is highly contagious and newborns are at highest risk of being seriously ill with the infection. A baby begins to develop immunity to whooping cough (also called pertussis) after his or her first set of immunizations but is not fully immune to whooping cough until the immunization series is complete (at 6 months of age or more). This low immunity that is normal in early infancy, in addition to a baby's very small lung and airways, make babies with the infection very vulnerable to its most serious effects. Whooping cough lasts for many weeks, causing spasms of severe coughing, often with a whooping sound at the end of the cough. In newborns, the breathing problems caused by whooping cough can be very severe and can even interfere with breathing in air and cause blue spells, pauses in breathing, vomiting, fainting (passing out), or even death. It can be spread from child to child or from an adult who typically is only mildly sick and seems only to have a cold or bronchitis. The number of cases of whooping cough in the United States has been steadily increasing since the 1980s, making more babies each year vulnerable to this life-threatening infection.

Learn more about whooping cough (pertussis) »

Learn more about whooping cough prevention »

Hear a baby with whooping cough »

Check out Silence the Sounds of Pertussis »

Surgeon General's Conference Sets Agenda for Preventing Preterm Birth

In June 2008, The National Institutes of Health for the Office of the Surgeon General convened a group of experts to describe the magnitude of the problem and evaluate strategies that might lead to prevention of preterm birth. Panels of experts evaluated a number of dimensions relating to preterm birth: quality of care and health services, psychosocial and behavior aspects, public communication and outreach, biomedical and epidemiological research, and professional education and training. Following this meeting, the Office of the Surgeon General released an agenda for activities in the public and private sectors to reduce the nation's rate of preterm birth. The agenda calls for a national system to better understand the occurrence of preterm birth and a national education program to help women reduce their chances of giving birth prematurely. The agenda also calls for improved methods for estimating the age of the fetus, and studies to identify biomarkers which would signal the beginning of preterm labor.

Learn more about the Surgeon General's Conference »