Resources

Perinatal Diagnosis & Care

Be Not Afraid ~ An online outreach to parents who have received a poor or difficult prenatal diagnosis

Prenatal Partners for Life ~ Support information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth

Sidelines ~ providing international support for women and their families experiencing complicated pregnancies and premature births.

Waiting With Gabriel ~ A memoir about prenatal diagnosis, continuing a pregnancy, and embracing a baby's life

While in the NICU

March of Dimes

NICU Parenting ~ focuses on coping and adjustment following the birth of a baby-- or babies-- who must spend time in a neonatal intensive care unit (NICU).

Peek-a-boo ICU ~ Created by a NICU RN, this site strives to empower the ICU parent with an online forum, provide information and resources to parents and family members.

Caring Bridge ~ Free patient websites that allows you to keep family updates during a serious health event.

It’s a Preemie Thing ~ Don’t let the name fool you, It’s a Preemie Thing offers specialty NICU clothing and merchandise and comes in sizes for less than 3lbs.

NICU Parent Support ~ information, Resources & Encouragement to Reassure and Support NICU Parents

Prayers in the NICU ~ A mother’s devotional while your child is in the NICU

Kids Health ~ common reasons for a NICU stay, those conditions, what causes them, how they're diagnosed, how they're treated, and how long infants usually stay in the unit after they've been diagnosed.

Kids Health / NICU ~ for when your baby’s in the NICU.

Kids Health / Health Issues ~ for when your baby is born with a health problem.

Share Your Story ~ the Parent to Parent section was created for Share Your Story community members to ask questions, raise concerns, and lend some advice about parenting a premature baby, a baby with a birth defect or talk about issues around pregnancy and infant loss. Here we can address the real issues that go beyond the NICU or birth experience

Prematurity

Hand to Hold ~ Carefully matches seasoned parents of preemies (Helping Hands) with parents in need of support. These peer-to-peer relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience of preterm birth
Prematurity.Org ~ Preemie Parents Support
The Preemie Primer ~ Preemie Parent Book
Preemie Proud ~a store that caters exclusively to premature babies (preemie) and low birth weight infants through various stages of development – from in the NICU to going home.
Preemie Help ~ Providing resources and information for parents, friends, family, and experts interested in, or affected by, premature birth.
Kids Health / Prematurity ~ A Primer on Preemies in the NICU

Multiples

My Twin Link ~ Organizes the many facets of having twins and provide a place for others to investigate and share.

Twinstuff ~ One of the largest online sites devoted to multiples and has been managed since its creation in 1998 by identical twin brothers Craig and Mark Sanders.

Multiple Birth Parents ~ online community forum for parents or care givers of twins, triplets or higher order of multiples

Children’s Hospital of Philadelphia ~ provides an overview of Twin-to-Twin Transfusion Syndrome

Kids Health / Multiples ~ provides an overview of parenting multiples, and all of the unique challenges which come with this experience.

Mother’s of Super Twins ~ MOST's mission is to advocate for quality prenatal care, promote healthy deliveries, and supply information to all multiple birth families in order to support successful parenting through every phase of their children's development.

Birth Defects & Diseases

Madison's Foundation ~ The only website in the world that connects parents whose children have the same rare disease.

Congenital Heart Defects:

Mended Little Hearts ~ A support program for parents of children with heart defects and heart disease

Congenital Heart Defects ~ provides a variety of information and support links.

Kids Health / Congenital Heart Defects ~ overview & treatment options.

Congenital Diaphragmatic Hernia:

Global CDH ~ Dedicated to sustaining and optimizing a parents ability to focus on their child’s care giving before, during, and after the child is diagnosed with a congenital diaphragmatic hernia.

Breath of Hope ~ Raises awareness of congenital diaphragmatic hernia by working with parents, family members, and medical professionals to educate and support all who are affected by or want to learn more about CDH.

The Parker Reese Foundation ~ Committed to providing quality care and support efficiently and effectively for the individuals and families they serve by funding medical research, advocating public awareness campaigns, supporting all who have been affected by the congenital diaphragmatic hernia birth defect.

Trisomy:

S.O.F.T. ~ Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.

Trisomy Online ~ Trisomy Online is a free email based support group that was formed in 1997 for families and professionals whose lives have been touched by the diagnosis of a trisomy condition.

Noah's Never Ending Rainbow ~ mission is to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with Trisomy and related chromosome disorders.

Trisomy 18 ~ mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families.

Prader- Willie Syndrome:

Prader- Willie Syndrome Association - an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Spina Bifida:

Spina Bifida Association - serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service.

Cleft Lip/Palate:

Cleft Palate Foundation - enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects.

Anencephaly:

AnencephalyInfo.Org

Anencephaly ~ contains many links to various sites which offer anencephaly support information, as well as grief support resources.

Rare Share ~ a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.

Kids Health / Birth Defects ~ information about the causes of, and treatment for various birth defects.

Kids Health / Marfan Syndrome ~ overview about Marfan Syndrome, it’s causes, & treatment plans.

Hydrocephalus ~ provides a variety of links to support and information and associated symptoms, as well as hospitals which specialize in their treatment.

Clubfoot Club ~ information & support resources for those born with clubfeet.

Omphalocele ~ provides information regarding the prenatal diagnosis and treatment following birth.

Gastroschisis ~ provides information regarding the prenatal diagnosis and treatment

Discharge and beyond

Zeebabee ~ visually stimulating apparel for mommy and baby!

Visual Stimulation for Babies ~ Facebook group to promote visual wellness

Button Buddies ~ Let your Button Baby look chic in these neat absorbent pads for around the button

Feeding Tube Awareness ~ Support and Resources for feeding tube families

Bel Scriba ~ Fun baby items

Kids Health / Taking your Preemie Home ~ what to expect upon discharge.

Kids Health / Intensive Home Health Care ~ managing intensive home health care following a stay in the hospital.

Kids Health / Emergencies ~ why it's important to keep a comprehensive record of your kids' health information nearby

Other Hospital Organizations Making a Difference

Jack Ryan Gillham Foundation - dedicated to offering financial support to families of critically ill babies and children at Arkansas Children's Hospital.

Zoe’s New Beginnings - provide a complimentary basket of practical, essential items to help make the transition from hospital to home a smooth one.

Project Sunshine - provides free educational, recreational, and social programs to children and families living with medical challenges.

Alyboo & Izybee Foundation - provides 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 with the RV's 4 Preemies Program

Beads of Courage – An organization dedicated to helping children with serious illness record, tell and own their stories of survival.

Ella's Halo- A non-profit organization created to provide some of the comforts of home to babies and families during extended stays in Twin Cities NICUs.

Graham's Foundation - Offer both practical and emotional support to parents of micro-preemie babies.

Pregnancy & Infant Loss

Faces of Loss ~ Online Pregnancy and Infant Loss Support Group

Baby Loss Directory ~ A blog maintained by volunteers to act like a "telephone book" for blogs dealing with the loss of a baby.

Compassionate Friends ~ Supporting families after the death of a child

A Place to Remember ~ Uplifting support resources for those who have been touched by a crisis in pregnancy or the death of baby.

Tear Soup ~ A recipe for healing after loss.

Still. ~ A collection of honest artwork and writings from the heart of a grieving mother

Anchored by Hope ~ An online Christian support and ministry for families experiencing a loss

The Housewife 13 ~ Catherine, mommy to an angel reflects on life after loss

M.I.S.S. Foundation ~ provides immediate and on-going grief support to all family members ie parents and siblings

Share ~ grief support for family and friends following infant loss.

Rowan Tree Foundation ~ provides ongoing support and resources for families who are coping with the devastating loss of a much-loved child.

Ways to Memorialize Your Lost Little Ones

Virtual Memorials – create an online memorial for your loved one

Gabsha Designs - Memorial Jewlery and other designs

Treasure Beans - Custom pebbles and stone creations that broke away from glacial deposits near Lake Ontario

Gianna’s Light – Wonderful bereaved Mother makes pregnancy and infant loss ribbon

BabyAngelPics – Beautiful photo restorations of you little one, also receive a free 8x10 and rights to the images

Butterfly Footprints – Using your baby’s footprints this site makes a gorgeous butterfly free of charge for grieving families.

Molly Bears – Hand made personalized bears the same weight as your sweet peas

Written in the Stars – Your angel’s name written as if it were in the stars above

Angel Wings Boutique – Bereaved Mother takes writes baby’s name with wings and posts the picture

Honoring Our Angels – Service project to honor your loved ones life by paying it forward

Wingseez TM - Infant memorial blanket that will not only provide soft touches of comfort during the difficult days after their loss but an everlasting memorial of their angel. Each blanket is made out of the softest fabric with white feather angel wings and the infants name. Also included is a personalized enclosure card with a poem written just for the parent and an angel wing charm for mom's bracelet.

Sweetest Keepsakes ~ a digital photo retouching service available to all families who have lost a child to stillbirth, complications due to prematurity, or other causes shortly after birth.

Now I Lay Me Down To Sleep ~ provides free memorial photos to families which have received a poor prenatal diagnosis or poor prognosis at birth.