A new international foundation and resource for parents with children diagnosed with 22q11.2, sometimes referred to as DiGeorge syndrome, or VCFS.

Caden was born with DiGeorge (VCFS/22q11) as well as some fairly complex heart defects. His parents document his ups and downs on his blog, kindly allowing us a "window seat" into their lives.

A Children's Hospital Boston program designed to meet the needs of clinical care for and research of congenital heart disease in relation to genetic disorders, such as; 22q11 deletion, Noonan, Turner, and Williams syndromes, and Kawasaki disease.

CHOP's (Children's Hospital of Philadelphia) online information page and gateway to services for children with 22q11.2 deletion.

The article that all every parent should read if their child has been diagnosed or is suspected to have the 22q11.2 deletion, written by Robert J. Shprintzen, Ph.D. This is a PDF document hosted at www.vcfsef.org.

Education and support for those diagnosed with VCFS (velo-cardio-facial syndrome), and/or DiGeorge and 22q11 deletions.

Impressive support from a grandmother spurred to compassionate action after her grandson was given little to no chance of survival. Onsite you will find lots of great info and the book, "God's Miracle of Sebastian" available for PDF download and/or purchase.

After PROM at 25 weeks presented, the prognosis was not good for baby Anastasia. Her mom never gave up and she has compiled lots of helpful resources and tips for you if you are facing this situation.

A wonderful email support group for those who have carried or are currently carrying an anencephalic baby.

Monika Jaquier's information and support site for parents facing a diagnosis of anencephaly but also an excellent resource for a family facing any fatal diagnosis. Jaquier has also established Prenat a general prenatal diagnosis website for those who are in need of resources in French and German. Prenat can be accessed back at our Resources page in the category International/Continental.

A supportive environment for those who are currently carring an anencephalic baby to term (or as long as possible), for those who have done so in the past, or who have terminated but now regret choosing to do so.

ASF has been assisting families diagnosed with anencephaly diagnoses for several years. They offer several stories onsite, and good resources for understanding the ethical conflicts involved in the exclusion of anencephalic infants from organ donation.

A study involving spontaneous outcomes of 211 pregnancies (those that did not end in elective termination), shows that 72% of anecephalic were liveborn.

The Down Syndrome Association of Greater Cincinnati is a leader in advocacy for children with Down syndrome. If you are considering choosing an adoption plan for your baby after a Down syndrome diagnosis, do contact DSAGC and visit their website to watch their video "Adopting or Releasing a Child with Down Syndrome".

This wonderful organization specializes in finding homes for children who will be born with any number of diagnoses, including; spina bifida, Down syndrome, fragile x syndrome. Expectant parents who are unsure that they can parent their child after a poor prenatal diagnosis are encouraged to correspond with CHASK.

A not-for-profit agency dedicated to placing Jewish children in Jewish homes. Many children referred to this agency are infants with developmental or moderate to severe physical disabilities.

This series follows the Breckenridge family's decision to attempt fetal surgery to save the life of their daughter, Garyn, diagnosed in utero with congenital diaphragmatic hernia.

A network of parents who have dealt with a cdh diagnosis. This email group includes parents of children who have survived, bereaved parents, and expectant parents.

Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support.

A November, 2003 report of findings from UCFS clinical trials comparing fetal surgery with postnatal care for severe CDH.

A Yahoo email group for families currently going through the sometimes complex care of an infant with cdh, and for those with older children with cdh.

Follow the story of baby Simone's diagnosis, CHOP surgeons and specialists discussing CDH, diagnostic tools for prenatal diagnosis, delivery options and experience, the neonatal experience, and beyond. Ten chapters are presented, each can be viewed in isolation.

Kays' Kids is a network of parents to children born with cdh who opted for treatment/surgery at SHANDS in Florida with pediatric surgeon Dr. David Kays. The original Kays' Kids site has been updated and is now known as "Real Hope for CDH".

Please visit the site to hear a Florida NPR report featuring information about cdh, Dr Kays, and the Kays' Kids support group!

The American Heart Association's Children and Heart Disease pages are a great source of information about congenital heart defects.

One of two sites produced by Anna Jaworski, mother to a child born with HLHS, editor of "The Heart of a Mother", author of "Hypoplastic Left Heart Syndrome: A Handbook for Parents", and founder of Baby Hearts Press.

We are thrilled to be sharing this UK-based family's story about their daughter Bethan, diagnosed prenatally with HLHS and who also has Turner's syndrome. While each family's "story" is unique to themselves, we all benefit so much from reading about one another! "Cheers" to the Edwards' for their proactive outreach.

Anna Jaworski's support and information resource for a variety of congenital heart defects. Anna is founder of Baby Hearts Press, also featured on our resource list for congenital heart defects.

Congenital Heart Information Network is a vast resource of current information regarding heart defects and treatments, as well as host of several online communities and a wonderful portrait gallery of children and their personal stories.

Any parent to a child prenatally diagnosed with HLHS should spend time on Debbie Hilton-Kamm's wonderful information and resource site. Of particular note, she has listed many hospitals across the U.S. that successfully treat hlhs.

Very supportive environment for newly diagnosed parents of children with single ventricle heart defects, primarily hlhs. This group offers email support, a site with lots of useful information including a special feature for expectant parents, touching videos of children, a book of stories and so much more.

Debbie Hilton-Kamm's must read article for the newly diagnosed expectant parents. Debbie is co-founder of California Heart Connection, producer of hlhsinfo.org and, most importantly, mom to a young son diagnosed in utero with hlhs.

The one-stop resource for diagnoses involving single ventricle hearts; accurate medical info, lots of encouragement, and an onsite message board.

Lenore Cameron's online support and education site for parents of children born with heart defects. Of special note are the "Pictures of Hope" annual group portraits of children with a variety of chd's, including HLHS, Single Ventricle, and Tricuspid Atresia.

Follow the progress of little Alexis, diagnosed in utero with Turner Syndrome and HLHS. Her parents have chronicled her life from birth.

This online group takes a special interest in families who are dealing with a prenatal cystic hygroma diagnosis. Find support, information, and families who have "been there".

Louise Foster has set up a website to assist families who receive the devastating news that their unborn baby has cystic hygroma. Louise's daughter Rosie was given no more than a 5% chance of survival after prenatal detection of cystic hygroma. But Rosie survived! Louise shares her story as well as those of other families who have contacted her. Also of interest to those who receive a prenatal Turner syndrome diagnosis. Thanks Louise for all your dedication to parents facing dismal news - you and Rosie both are rays of hope and light!

Brighter Tomorrows, created specifically for parents after a Down syndrome prenatal diagnosis, promises accurate information about down syndrome. Indeed, but so much more . . . this would make the must-see list if we could only list even two or three resources.

Diagnosis Down Syndrome is an excellant resource for those who have just been given the news that they are expecting a child with Down Syndrome. The site contains many family stories as well as links to important Down Syndrome sites.

Down Syndrome for New Parents is an inspirational resource produced by Thomas and Michel Paul, parents to a son, Mikey, born with Down Syndrome. The site contains many essays, personal stories, as well as a message forum.

Real-life families discuss their children: problems and solutions, accomplishments and abilities, various perspectives about the many stages of parenting children with Down syndrome. Don't skip this resource!

A very active message board with mothers on the prenatal journey, and those months and years down the road. Very supportive group.

Home of the Einstein-Syndrome list, a group of parents and professionals who "push the limits of what it means to have Down Syndrome".

When women from all walks of life, ethnic and religious backgrounds, and professional achievement come together to discuss the experience of loving and living with their children with Down syndrome, what do they come up with? Gifts, a book, an outreach, a movement of the heart and soul, from those well along on the path to those just beginning.

GiGi's Playhouse and GiGi's Playhouse Too, are both located in Chicago suburbs. GiGi's Playhouses are Down syndrome awareness centers. They provide a myriad of services and opportunities for infancts and children with Down syndrome and are an especially supportive resource for those who have just received the news about their baby.

Energized by a series of exciting events in Down syndrome advocacy, this group of parents hosts a boldly pro-life email group and advocacy outreach to parents and professionals.

Up-to-date information and access to other families with children who have Mosaic Down syndrome. Even the medical professionals consult this site.

Produced by Linda Beets, mom to Karlee, diagnosed with Mosaic Down Syndrome, this site features a message board, many articles about Mosaic Down Syndrome, as well as an extensive list of "personal stories".

A welcoming online community for families where you can create your own page to tell your story. Upside is hosted on the user-friendly Ning format, so you can easily share your links and photos, create and join regional groups. You will be amazed at how quickly this group will grow, allowing you to connect with more and more parents on the same path.

A team of widely respected theologians, ethicists, clergy, and medical professionals faithful to the magesterium and religious directives of the Catholic Church. NCBC consults can help families come to morally good decisions about an unborn baby or medically fragile child.

The Institute will provide assistance with ethical consults, high-risk obstetrics care (for those in proximity), or referrals to a network of medical professionals who will help you carry your baby to term, or as long as is possible. Benotafraid.net can help expedite a consult with Sister Renee if necessary.

The Westchester Institute brings together a formidable team of advisors knowledgeable in matters both moral and medical, guided by a strong Catholic commitment to the dignity of the human person.

A discussion of conditions for which fetal surgery has provided favorable outcomes.

Children's Hospital of Philadelphia Center for Fetal Diagnosis and Treatment website features family stories and case studies regarding many diagnoses and fetal treatments, including; Congenital Cystic Adenomatoid Malformation (CCAM), Lower Urinary Tract Obstruction (LUTO), Sacroccygeal Teratoma (SCT), and Spina Bifida.

A brief interview (including podcast) with Dr. Micheal Harrison, a pioneer in the field and long-time director of the UCSF Fetal Treatment Center, as well as Professor of Surgery and Pediatric Specialities. Also access useful and interesting sections of the UCSF Fetal Treatment Center from here.

Fetal Diagnosis Therapy at Vanderbilt University Medical Center is known world-over for successfully treating baby Samuel and many, many other unborn babies.

The mission of FHF is to help families dealing with a fetal syndrome (such as twin-to-twin-transfusion syndrome) find accurate information and assist them in finding the professionals who can help them fight for their babies' lives.

This group is comprised of an alliance between three hospitals and various specialist physicians located in the Los Angeles area. The unique combination of skill and resources offers families real life-saving options for their babies.

This organization of professionls across spread across the United States is dedicated to improving the care of patients with fetal/perinatal urologic problems, with a special emphasis upon hydronephresis.

A father to a child with Down Syndrome discusses his experiences with professionals inovolved in the care of his daughter.

CHASK (Christian Homes and Special Kids) has assembled a brochure that is appropriate for parents who have been given a poor prenatal diagnosis. As professionals present options to parents, they should consider presenting this CHASK brochure. PDF download available.

Being With is a chartitable organization that trains health care professionals and volunteers "how to look for, and see, the intrinsic dignity, unique mystery, and inherent "lovableness" in every person, no matter how severe the suffering".

A downloadable brochure for parents and tips for diagnosing physicians on how best to offer the diagnosis of Down syndrome. Concise listing of resources and information which won't overwhelm parents or professionals.

Tips culled from an American Journal of Obstetrics and Gynecology survey of 1,250 mothers who received a definite prenatal diagnosis of Down syndrome

Laurie A. McCray, RN, MS, writes of her own personal experience of giving birth (by emergency Cesearean) to her son, Michael, who has Down syndrome. She offers tips to professionals who are helping the newly diagnosed parents.

A mother discusses what "worked" for her after her baby was diagnosed with multiple serious anomalies.

Debbie Hilton Kamm, co-founder and president of CA Heart Connection and producer of the popular complex heart defect information site HLHSinfo, authored this article for those who will be giving a diagnosis to parents. First published in Congenital Cardiology Today Article is in pdf format.

Bring Sonography Now to your office for specialized training - it will make your practice more capable and more compassionate.

Kathy Carroll, a professional bereavement counselor, discusses a case that taught her how to help parents experience "the miracle of time".

Mother of a child with trisomy 13 and founder of a large online community of families who are bereaved, currently carrying an unborn child, or currently raising a child (and sometimes adults) with trisomy 13, ThereseAnn Siegle has a message she hopes physicians, genetic counselors, and all who work with families will take to heart.

An article that addresses a utilitarian challenge to the idea of "complicity" in healthcare. Subtitled, "On the supposed rightness of (sometimes) intentionally cooperating in wrongdoing", Luke Gormally's article was presented at the 2003 Linacre Centre Conference on Cooperation, Complicity & Conscience.

Catholic Christian-based support for those who miscarry their baby, or experience a stillbirth, or loss upon birth. BIHAA offers financial assistance for funeral expenses, pastoral support for those who would like to have a memorial ceremony or mass for their baby, and additional support as their ministry grows nationwide.

"Baptized into Christ's Death and Resurrection: Volume 2" by Mark G. Boyer is a healing study and preparation for the Catholic funeral rites for children (and babies). This may be both a practical and prayerful resource for parents.

Infant bereavement is an area of outreach for which Elizabeth Ministry is well-equipped. Here is a catalogue of books, pamphlets, and small gift items that would be valuable to bereaved parents.

Bernadette Zambri, bereaved mother, has developed wonderful grief resources for this Catholic ministry (open to parents of any or no religious affiliation). Zambri's "Our Babies Are Safe With God" will reassure the hearts of many bereaved parents. Also of particular interest onsite is a "Grieving Parent's Prayer" as well as momentos available through Morning Light Ministry.

Baby Remi overcame tremendous odds and survived for three months with ARPKD that had so severely affected her kidneys, they had to be removed. When baby Remi passed away, her mom Jessie felt called to help other parents facing a fatal diagnosis for their baby unborn and born. Jessie is one of our moderators here at BNA, too.

Many parents who have lost a child through stillbirth will find comfort by visiting the Shrine of the Holy Innocents. They can inscribe their child's name in a "Book of Life" where a candle is always lit. A monthly Catholic Mass is also celebrated in honor of the children.

Fantastic Christian support for moms going through some of the hardest moments of their lives. Just some highlights; "Dreams of You" is a memory book, burial gowns in a range of sizes, a comfort bear, a basket full of items that moms will want in their possession . . .

Sufficient Grace is based out of Ohio, but do contact them through the website for their range of services outside the area.

The Luca John Foundation will help families with funeral expenses after the loss of an infant - including the sad event of stillbirth.

This wonderful organization assists parents with the costs of an infant grave marker/memorial in the Pennsylvania area.

An organization dedicated to serving the needs of families with a child with HPE, including; prenatal diagnosis, newborns and infants, children, adults, and families who have lost a child with HPE.

A new hub and community for those with children affected by holoprosencephaly. The site features clinical and supportive information as well as stories about children with HPE.

An NHI summary of recent research about the range of degrees and type of HPE, their prognoses, as well as an introduction to current clinical trials.

A study published in the American Journal of Medical Genetics discusses the misdiagnosis of HPE in as many a 19% of the 255 children.

Based out of Seattle, sponsored by Children's Hospital and Regional Medical Center, the site features up-to-date research, medical treatments, and several stories involving hydrocephalus.

This organization takes support very seriously. They help famiies contact professionals who can help, send out information packets, and in general restore hope where there may have been despair regarding a hydrocephalus diagnosis.

The Institute provides excellent summaries of conditions such as Hydrocephalus and Dandy Walker syndrome, as well as illustrations of how these conditions affect the brain. You can contact qualified specialists through the website, as well.

A systematic review of case studies involving children prenatally diagnosed with isolated ventriculomegaly.

A network of professionals throughout the UK guided by Christian ethics in their approach to providing medical care.

A Catholic/Christian organization for families with children who have special needs or disabilities. Faith and Light fosters bonds of friendship and hope between families, within communities, and churches.

Family & Life is dedicated to life-affirming outreach not only to families within Ireland, but in Asia and Poland, as well. If you contact Family & Life from within Ireland, they willl connect you with local organizations to and agencies to help you adjust to the news of your prenatal diagnosis, and beyond.

The establishment known as the Jérôme Lejeune Foundation, created in 1995, is intended to follow up the work to which Professor Jérôme Lejeune devoted his life: - Medical research into intelligence diseases and genetic diseases,

- Care and treatment of patients, in particular those suffering from Trisomy 21 or other genetic anomalies, whose lives and dignity must be protected from the moment of conception until they die.

L’établissement dit Fondation Jérôme Lejeune, fondé en 1995, a pour but de poursuivre l’oeuvre à laquelle le professeur Jérôme Lejeune a consacré sa vie :
- la recherche médicale sur les maladies de l’intelligence et sur les maladies génétiques,

- l’accueil et les soins des personnes, notamment celles atteintes de la trisomie 21 ou d’autres anomalies génétiques, dont la vie et la dignité doivent être respectées de la conception à la mort.

Human Life International (HLI) is a Catholic organization promoting and defending sanctity of life issues with over 40 affiliates world-wide.

La nostra Associazione opera per tutelare la Maternità e la Vita Nascente. Ci prendiamo cura della vostra gravidanza in presenza di malformazioni fetali, mettendo a disposizione i migliori specialisti per la diagnosi prenatale e la chirurgia fetale invasiva. Il nostro Centro di afferenza per la diagnosi prenatale è il Policlinico Agostino Gemelli di Roma, attraverso la équipe del prof. Giuseppe Noia. Sosteniamo la famiglia che sceglie di dare alla luce il figlio che ha ricevuto la diagnosi di “incompatibile con la vita” a causa delle sue patologie, e che rinuncia alll’aborto terapeutico. La Quercia Millenaria è l’unico Centro di Aiuto per il Feto Terminale operante in Italia. A sostegno delle famiglie provenienti da altre regioni italiane, offriamo un alloggio gratuito nelle vicinanze del Policlinico Gemelli per la residenzialità delle coppie nella fase delle terapie fetali o del parto. Una grande Rete di Famiglie è a vostra disposizione per sostenere la scelta di amare vostro figlio fino alla fine, accompagnandolo nel suo tratto di vita terrena.

A network of families and physicians who will assist parents who are carrying a baby with a fatal diagnosis.

Prenat ist eine Initiative; von Eltern, die sich gegen einen medizinisch indiziierten Schwangerschaftsabbruch nach schwerwiegender Diagnostik ihres Baby’s entschieden haben, für Eltern, deren Baby vorgeburtlich mit einer schwerwiegenden Behinderung diagnostiziert wurde.

Wir möchten durch Erfahrungsaustausch, Anregungen und Verweise auf Informationen zu der entsprechenden Behinderung Betroffenen durch die schwierige Zeit mit ihrem sterbenden Kind helfen.


Prenat est une initiative; par des parents qui se sont décidés contre une interruption médicale de grossesse après un diagnostic d’un handicap majeur chez leur enfant, pour des parents dont l’enfant à naître est atteint d’une affection d’une particulière gravité.

A travers d’échanges de vécus, de suggestions et d’informations sur les handicaps, nous voulons apporter de l’aide aux parents concernés pour passer ce temps difficile avec leur enfant mourant.

Respekt is the Catholic pro-life movement in Sweden promoting the sanctity of human life from conception to natural death. Respekt informs about and analyses news concerning the dignity of life in medicine. Respekt participates in the societal debate around life issues and offers private guidance and counselling. Respekt co-operates with other national and international life movements in furthering a culture of life.


Respekt är en katolsk rörelse som arbetar med att främja det mänskliga livets okränkbarhet från konception fram till naturlig död. Respekt är ett forum för viktiga livsfrågor inom medicinens område. Med hjälp av information och vägledning hjälper Respekt människor att ta ställnig till de många etiska dilemman vi möter. Respekt engagerar sig i en rad frågor och arbetar såväl lokalt som nationellt. Vi samarbetar med andra organisationer både i Sverige och utomlands.

Respekt ist eine katholische Bewegung, die die unanatastbarkeit des Lebens von Konception bis natürlichem Tod stützt. Respekt ist ein Forum für wichtige Lebensfragen im Gebiet der Medizin. Mit Hilfe von Information und Leitung hilft Respekt Menschen Stellung zu nehmen in den vielen etischen Dilemman auf die wir stossen. Respekt engagiert sich für eine Reihe von Fragen und arbeitet lokal sowie national. Unsere Zusammenarbeit ist mit Organisationen in Schweden und im Ausland.

A French association for parents who have received a poor prenatal diagnosis.

This text presented by the organization's founder (thank you, Mr. Schlager!): TRISOMÍA 18 is a new organization that will be a foundation in a short time. Our goal is to change our society in order to recognize that the children with Edward's syndrome are alive and that they deserve all the personal and medical care to provide the best possible quality of life, respecting their humanity. We are helping the families that contact us to do so, and on the other side, we are building a medical community with a fresh and open mind about trisomy 18. This org is based out of Chile.

TRISOMÍA 18 ES UNA ORGANIZACIÓN NUEVA, QUE SERÁ FUNDACIÓN EN EL CORTO PLAZO.
NUESTRA META ES CAMBIAR NUESTRA SOCIEDAD, TAL QUE SE RECONOZCA QUE LOS NIÑOS CON SÍNDROME DE EDWARDS ESTÁN VIVOS Y QUE MERECEN TODO EL CUIDADO PERSONAL Y MÉDICO PARA DARLES LA MEJOR CALIDAD DE VIDA POSIBLE, RESPETANDO SU HUMANIDAD.
ESTAMOS AYUDANDO A LAS FAMILIAS QUE NOS CONTACTAN A HACERLO ASÍ Y ESTAMOS FORMANDO UNA COMUNIDAD MÉDICA CON UNA VISIÓN FRESCA Y ABIERTA RESPECTO DE LA TRISOMÍA 18.

A beautiful Spanish language website, featuring the story of baby Valeria, diagnosed with trisomy 18, prayers, letters, and the potential for additional Spanish language stories.

An Alliance formed to improve the lives of those affected with Autosomal Recessive Polycystic Kidney Disease and Congenitial Hepatic CHF through education, advocacy, and by promoting research.

A great internet-based information site featuring a hub of forums for patients (parents) and physicians. Access to AKJD, The Offician Journal of The National Kidney Foundation free articles.

The National Kidney Disease Education Program provides a listing of Kidney-Related organization in this "Chronic Kidney Disease Compendium" PDF file.

An excellent parent-run site featuring family stories and photos of children diagnosed with and treated for PUV. Of particular interest is a compilation of relevant medical articles and the associated PUV email support group.

A research advovacy organization with one goal in mind: to end Polycystic Kidney Disease (PKD). The site offers information about PKD a list of local PKD chapters throughout the U.S., France, Canada, and Japan.

This organization of professionls across spread across the United States is dedicated to improving the care of patients with fetal/perinatal urologic problems, with a special emphasis upon hydronephresis.

The website of the American Urological Association can help identify the top pediatric urologists as well as provide useful information about diagnosis and treatment for renal and urologic disease.

Brian Littrell's HH Club has assisted families in the central or eastern Kentucky regions who have a child with a cardiac condition.

A safety net for children with disabilities.

A family keenly aware of the great need that working-class families experience when a child requires a pro-longed hospital stay. Faith's Hope Foundation advocates for such families and, perhaps more importantly, assists wtih financial gifts in the greatest areas of need.

Family Fund provides grants to families within the UK. Assistance is based upon income and particular need.

First Hand is a pediatric healthcare foundation devoted to financially assisting families of children with special medical needs. Some of the types of needs that First Hand typically assists with include; clinical expenses, special equipment requirements, such as wheel chairs, and expenses associated with travel and relocation when a family must travel for a child's treatment.

Services expenses for children with special needs sometimes exceed what is allowed by some insurers. These families can fall through the cracks. Frankie's Fund, founded by a mom physician, helps to cover these extra expenses . . . and more.

A great organization founded by Maura and Charlie Weis (Notre Dame football), devoted to improving the quality of life of those who, like their daughter Hannah, have special needs. Hannah's Helping Hand Grant Program is available to those in "Michiana", Indiana, or Rhode Island (see details on the site).

Named for Yesica Santillan, "Jesica's Hope Chest" assists families with medical expenses when insurance or Medicaid has been exhausted, housing costs for families who must travel for their child's care, and various other expenses associated with special needs some children may have.

This option can offer tax relief to families who are not eligible for Medicaid programs, but cannot afford the resources sometimes necessary to care for a disabled child.

Kaitlin Marie Bell Foundation provides financial assistance to support the needs of medically and physically challenged children.

Assistance for families throughout Delaware, Pennsylvania, and New Jersey. Please not that Kelly Anne Doyle Fund application must be submitted through a professional assisting in the child's care (social worker, physician, etc.).

Some families will be eligible for assistance for medical expenses not covered by insurance. Check the website for eligibility requirements.

The present available funding from PANF does not appear to cover many prenatally diagnosed conditions (with the exception of Sickle Cell Anemia), however, they may be able to assist with the cost of RSV shots - something many medically fragile infants will need.

This organization can assist families by providing grants for emergency treatments, financial assistance for medication, and support for a variety of other medical needs associated with living with cystic fibrosis.

This nation-wide league of flying organizations and volunteer pilots may able to assist in transporting a child to a distant hospital or treatment facility.

An organization that offers financial assistance to families with special needs children. Jordan, the org's namesake, is the daugther of retired Boston Red Sox first baseman John Olerud and wife Kelly. Contact information available onsite to obtain details about eligibility.

The mission of the Morlock Foundation is to "improve the lives of families whose children have a disease by mobilizing the power of a caring community, spiritual support, financial grant assistance and empowerment." The foundation assists families by providing grants, insurance negotiation, and if necessary, legal matters.

A parent-founded organization dedicated to assisting families of children who are hospitalized for an extended time, the Spare Key Foundation provides mortgage grants to families in the Minneapolis/St Paul area.

This article in Advances in Neonatal Care walks parents step-by-step through the stages of care for an infant who is receiving palliative care after birth until natural death.

An American Academy of Pediatrics discussion of how to implement and modify DNR orders as well as reevaluation of such orders when a child may be at risk of cardiovascular instability due to the anesthesia or surgical intervention.

We highly recommend the HLHS Info site to any parent dealing with decisions about complex heart defects. This page in particular is a great start page with regard to understanding the options available for single ventricle heart defects.

Ascension Health (A Catholic Medical Network), has provided easy to understand and useful summaries of several key ethical principles that may be useful to parents as they make difficult decisions, some of which include; Double Effect, Beneficence, Material and Formal Cooperation, and Human Dignity, each rooted in the long and esteemed tradition of Catholic ethics.

The Nisonger Center is a source of accuracy and advocacy regarding accessibility to medical care for children and adults who are disabled. In particular, their "Lives Worth Saving" program deals specifically with the issue of organ transplantation. See their recent publication, "Organ transplantiona, organ donation and mental retardation" listed at the bottom of their "Lives WorthSaving" page.

An excellent discussion of infant palliative care. The author makes important distinctions among related concepts, such as; palliative care, hospice care, end-of-life care, and bereavement care.

A new site-resource for those who are considering perinatal hospice (palliative care) for baby. Find books (and other resources) that affirm the choice to forego complex or extra-ordinary surgical interventions, many useful articles to help create a palliative care plan, as well as a lengthy list of perinatal hospice facilities and programs throughout the United States and beyond.

One mom presents an analysis of obstacles to communication based on expected attitudes of parents who are given an incompatible with life diagnosis for their child. Discussed are ways to avoid these obstacles as well as realistic goals for parents involved in creating a Plan of Care for their child.

The TSS Foundation will support any family facing the complex and difficult determination of "medical futility" to sort out their ethical and legal options.

Providing and expediting the medical care of children in need throughout Africa, Asia, the Carribean, Europe, and Central and South America. Iraqi baby Noor, is one of their best known patients.

An extension of Catholic World Mission, Helping Hands Medical Mission provides surgeries and treatments to children in rural and devolpmentally abandoned areas.

Dr. William M. Novick and his ICHF team have performed nearly 3,000 life-saving heart surgeries throughout the world.

A non-denominational Christian organization that travels from the U.S. to Asia, Africa, and Central and South America to perform life-saving and life-enhancing surgeries to children in need. They will also faciliate the transport of children to the U.S. for surgery, it is required.

With foundational roots in the esteemed medical mercy projects "Chain de l'Espoir" and "Doctors without Borders", Surgeons of Hope Foundation has provided needed surgical care and training in communities througout the world.

A new international foundation and resource for parents with children diagnosed with 22q11.2, sometimes referred to as DiGeorge syndrome, or VCFS.

Up-to-date information about how CHARGE Syndrome is diagnosed and a great community of support and information regarding the management of CHARGE associated anomalies.

Goldenhar syndrome can affect several body upper body systems, often including an underdeveloped jaw, eyelid anomalies, ear anomalies, but in addition, can also include heart and kidney defects, and more. The Goldenhar Syndrome Support Network is based out of Canada, but includes resources for those in the US and UK.

A very important source providing support and information if your baby has been diagnosed with an ano-rectal anomaly, or one of a number of syndromes such as, Hirschsprung's Disease or VATER Association

TAR Syndrome is typically characterized by limb defects and a blood platelet deficiency. However, some children with TAR will also have heart defects. TAR Syndrome Support is a great home-base and launching pad for further research and resources for families dealing with this diagnosis.

PKS Kids is for families living with a child affected by Pallister-Killian Syndrome. PKS Kids assists in providing information about securing a diagnosis, promoting awareness of PKS in the general community, and helping families find the resources they need to adapt after a new diagnosis. Gretchen Peters, founder of PKS Kids, has shared her story onsite with us.

Alexandra's House was one of the first perinatal hospice programs in the U.S. It continues to serve those in the Kansas City, MO area with a compassionate team comprised of the original founders and many dedicated volunteers. Read about Patti Lewis, one such Alexandra's House founder,
here.

Serving families in southeast Michigan, Angela Hospice was founded in 1985 by Felician Sisters. They developed a prenatal hospice program in 2000 to help parents cope during the months leading up to the birth of baby.

Individualized perinatal palliative and hospice care through Children's Hospitals of Minnesota.

A natural extension of the Tepeyac Family Center, this medical team is dedicated to implementing the highest quality professional care informed by the moral and medical ethics of the Catholic Church. Offices in Fairfax, VA and Silver Springs, MD.

The realization of a dream first sketched out by Dr. Byron Calhoun over 10 yrs ago, the newly established Haven Network provides many necessary services for those who will need perinatal hospice in the Rockford, IL area. Read about Dr. Calhoun's previous experiences with perinatal hospice here.

This article discusses increased risk associated with early amnio, vs CVS. The risks specifically mentioned include club foot and pregnancy loss.

2003 Diagnostic Imaging Online article describes the benefit of using MRI in prenatal diagnosis of brain lesions and malformation.

Obstetrical Sonography: The Best Way to Terrify a Pregnant Woman, Roy A. Filly, M.D. appears on The Choroid Plexus Cyst Website, a resource dedicated to helping expectant parents share experiences and exchange information about choroid plexus cysts.

A 16-year retrospective study of loss in twin pregnancies after mid-trimester amnio shows significantly higher rates than loss in singleton pregnancies. Parents should have access to this information when making prenatal testing decisions.

A retrospective study identifies several factors that contribute to an increase risk of fetal loss after an amnio.

Lab Tests Online's helpful guide to understanding clinical lab testing.

This USCCB statement does is not limited to prenatal genetic testing, however prenatal testing is one focus of the document. In direct terms, the Bishops discuss when prenatal testing is acceptable and when it crosses over into the category of immoral and unacceptable. For Catholics discerning the issue of whether to pursue further testing, consider consulting our ethics resources as well as your own pastor.

The ACN has an excellent feature page for those who are interested in the Catholic perspective of prenatal testing and related reproductive ethics issues. Take a few minutes to really peruse the site as there are multiple link-offs.

Family support group for children with Cri du Chat syndrome.

A support, education, and awareness organization for parents of children (and for those expecting children) born with trisomies and related chromosome disorders. Watch this new organization blossom -- help this organization to grow over time by contacting them if you are in need of support, and donating to them if you would like to offer support!

A very personable and reassuring website combining "trisomy awareness" with a great selection of support/information links for the rarer trisomies.

Baby Matthew was diagnosed with full trisomy 9, a syndrome with extremely rare incidence. Few live births were documented, but Matthew's parents chose to proceed with hope in their hearts. This family offers a very personal outreach for those who are dealing with the rarest of the rare.

A comprehensive rare chromosome disorder support group featuring an impressive range of services. UK-based.

A very useful explanation of the Catholic position of use of IVF and cloning, as well as a brief discussion what is an acceptable approach to infertility. Please note: we realize that not everyone who has need of the resources on this website is Catholic, and that some (even among Catholic visitors) may have conceived their children through IVF. We are here to help you in the decision to carry your baby, regardless of how your baby was conceived. This resource is to help inform and guide those who want to know what the Catholic position is as well as abide by it.

The easiest and simplest form of natural family planning. This method for avoiding was tested in China, when strict population control sanctions were strictly adhered to (imagine the pressure!), and was found to be very effective.

Frank answers to difficult questions, online experts, and nfp professionals for the state of California with access to professionals beyond CA, as well.

A website and blog maintained by a Catholic molecular biologist. Nowhere will you find Catholic principles as applied to current bioethics and reproductive news as cogently as you will at Mary Meets Dolly.

Dr. Hilgers and team have developed a very successful approach to treating infertility, which is called NaPro technology - all completely in line with Catholic reproductive ethics. Additionally, they can assist with difficult pregnancies, problems that make fertility awareness more challenging, and other reproductive-related issues. Cross-referenced in Ethics Consults.

An interesting Pediatrics article (September, 2004) discusses the idea that in cases of "incidental" prenatal diagnosis of TS, that is, when an amnio is performed for reasons other than suspect ultrasound markers, counseling about the child's prognosis may be skewed by "ascertainment bias". From the abstract: " Because of such ascertainment bias (ie, that more severe cases are more likely to present to medical attention), the severity of the reported Turner syndrome phenotype is likely to be exaggerated for the Turner syndrome population as a whole. This leads to significant deficiencies in the ability to counsel families in which a patient with Turner syndrome is diagnosed prenatally, especially when the diagnosis is incidental".

A more concise abstract and access to the full article available here: http://tinyurl.com/58p58

Stefan Schwarz was not diagnosed with Klinefelter's Syndrome until he had reached his mid-20's. Frustrated that there was not much support for him, he founded his own support group, which grew throughout the years to expand nation-wide. Mr. Schwarz has collected lots of very useful information about Klinefelter's, and coordinated much-needed support for families and men affected by the syndrome. Several parents share their stories on the site, some with in utero diagnoses, and some diagnosed well after birth.

The Magic Foundation provides parent to parent networking for those affected by several disorders, some of which include; Klinefelters Syndrome, Triple X Syndrome, and Turner Syndrome.

This Journal of Korean Medical Sciences article offers recommendations about accurate counseling to parents when a sex chromosome abnormality is detected. Some may need to install a language pack to read the full article.

Parental Decisions: abstract

This BBC article addresses issues surrounding poor counseling with regard to prenatally diagnosed sex chromosome disorders.

A very readable, and worthwhile article in response to the BMJ's "What parents are told after prenatal diagnosis of a sex chromosome abnormality". This article is more about prenatal diagnoses in general and less about specific sex chromosome conditions, but is valuable in conjunction with other articles (several of which are found here in our Resources section).

The mother of a child born with Trisomy X formed this international support group in 1997. She provides an information packet to those who inquire.

Mother and chairwoman of the Turner syndrome Support Society (UK) discusses the importance of understanding the distinction between classic and mosaic Turner syndrome in this brief and interesting appeal.

A comprehensive site dedicated to providing education and resources for those affected by a Triple X syndrome diagnosis.

A National Institute of Child Health and Human Development resource that provides clinical information about Turner Syndrome and current studies of interest.

An online support group for parents expecting a child with Turner Syndrome.

The Turner Syndrome Society of the United States has introduced a new "Turner Syndrome Guide for Families".

Produced with the help of professionals who work with infants up to adolescents with Klinefelter syndrome, this video will be especially relevant to those making decisions and seeking information after a prenatal diagnosis.

This article, which appears on the Danish Turner Center website, shows that when genetic counselors offer thorough and accurate information regarding Turner Syndrome, fewer parents choose to abort.

A mutual support organization for those affected by Arthogryposis. You'll find family/member stories, a message forum, and all the benefits of a community, including information and encouragment. This group holds regular conventions, as well.

A very rare syndrome, EvC affects not only bone growth, but also other systems in the body, including the heart. A mom with a lot of devotion has gathered lots of useful information, including several stories about children with EvC to support other families.

Information, family support, and encouragement for those with a definite diagnosis - especially supportive for those with a prenatal diagnosis.

A new and incredibly useful hub for families who have children with Achondroplasia or anyone who is looking for good accessible information about Dwarfism and some other skeletal dysplasia conditions. Some of our BNA families can be found here. This hub has grown from a single personal hub as parent after parent received diagnoses . . . just watch it grow.

During his 90 minutes of life, the Baranowski's made a pledge to their newborn Luca John to do all they could to find a cure for the condition that would end his life so soon, short rib polydactyl syndrome. Their mission includes funding research and assisting families in bereavement, yet their website will offer you so much more. Lots of information about a variety of skeletal dysplasias and an instant community to help you learn more and cope with the situation you could be facing.

A different vision for securing the good life for your child with special needs. Al Etmanski lays out his approach to building relationships and drawing out beneficial links within one's own community, inspiring and inviting parents to explore his seven step approach to special needs future planning.

MetLife offers professional and very reliable assistance through their MetDESK program: Division of Estate Planning for Special Kids.

A network of "Advocates" under the direction of Mary Anne Ehlert, CFP, who is both personally and professionally familiar with the issues important to families.

Special Needs Advocates for Children is a tremendously useful organization founded by parents of a child born with multiple special needs. SNAP will educate families about getting the most of medical insurance coverage, setting up trusts, and much more. Sign up for the SNAP newsletter to stay informed.

The Special Needs Planning Group assists families in Canada (primarily Ontario). These family advisors help families assess their needs, goals, and desires in terms of a family vision, and then provide access to the tools to help families realize their overall vision.

A supportive hub of information, articles, tips, and even a message board, for those who may be bringing baby home with a tracheostomy.

ARCH Respite Network provides a respite locater, well as decsribes and discusses the goals of respite care providers, and provides access to many other potentially useful resources for families.

There are no mothers under more stress to provide breast milk to their babies than those in the NICU. Many moms will need a breast pump and these are costly. While insurance companies are beginning to chip in, many still will not. Thanks to The Zachary Williamson Memorial Foundation, moms in need of a breast pump have a place to turn.

No cost to those in Washington State and still a great deal for those outside Washington, this Care Notebook and Organizer will help parents keep track of all appointments, bills, medical conferences, and any other type of documents and correspondence concerning the care of their child. Also see downloadable and printable forms available for the Notebook.

Encouragement and support for breatstfeeding babies withc cystic fibrosis.

A Texas-based network that helps families with infants with disabilities by providing emotional and spiritual support, as well as assistance with helping find other needed resources.

This message board for reflux support gets gold stars from parents with a variety of defects, including Congenital Diaphragmatic Hernia and Congenital Heart Defects.

A Catholic-based home-school program for children who have developmental delays.

A positive environment for parents in need of an encouragement, truly useful information about services and products, and even opportunities for find equipment or other needed items from other families.

St Joseph's House provides loving and extensive respite care during the times they are most needed for families who have special kids with special needs. The home has been administered by the LaHoods for 25 years just outside Washington DC.

A national resource for parents (and caregivers) who have a tube-fed (parenteral or enteral nutriton) infant or child. Services are free. Additionally, the foundation's website links to other great resources for those who need this particular support service.

A Pennsylvania resource for those with a child who is ventilator dependent. Access to home health aides and respite care. Those out of PA can benefit from the resources listed onsite.

A great little sign that will help keep your medically-fragile baby healthy.

SODA POP provides an online outlet for siblings and tools for parents to help siblings process their feelings and experiences.

The SSP website offers many articles to help parents understand how to help siblings in special needs families. There are a number of workshops, books, and other products, so be sure to peruse the site!

The perfect baby book for parents who expect their child will have surgeries or be hospitalized after birth. Adaptable to various outcomes.

ACPCG photographers have experience with families in medical crises and will photograph your child in a NICU/hospital environment, or at your home. They charge no fees for the privilege of providing your family beautiful pictures of your child.

Heirloom photographs, free of charge, for those anticipating loss of baby. Founding member Cheryl Haggard lost her baby boy, Maddux, days after birth. In the midst of their tragedy, the Haggard family had the presence of mind to call in a photographer to take the only professional photos of their son they would ever possess. Cheryl wants to make sure that other families have the opportunity to have photos of their babies, too.

Abstract of an article published in 2003 ediction of "Pediatric Neurosurgery" that discusses the effect of timely fetal surgical intervention to reverse type II Arnold-Chiari malformation associated with myelomeningocele.

A mom reaches out to offer hope, inspired by her baby son, Lincoln. Read their story!

A September, 2003 report from Children's Hospital of Philadelphia discussing observed benefits from fetal surgical interventions for treatment of Spina Bifida.

Isaac's parents have really done a great job in providing a resource full of hope and helpful tips for parents. If your baby has been diagnosed with spina bifida considering contacting this family through their website.

Management of Myelomeningocele Study (MOMS). Information about current clinical trials for prenatal and post-natal surgeries.

A Yahoo based email group for parents expecting a baby with SB to chat with those who are already parenting a child with SB. Very active list!

Resources and information relevant to a diagnosis of Spina Bifida, as well as an excellent collection of "real stories".

A new carrying to term resource suitable for any diagnosis. In person and telephone counseling available for parents in the St Louis area.

A Mother's Heart Ministry wasfounded by a mom who carried her baby, and her twin sister, knowing that she would likely not survive her dual diagnosis of HPE and Trisomy 13. This Christian based organization is especially for those in the Mitchellville, Maryland vicinity, but the online articles and tips are useful for anyone who needs support during a poor prenatal diagnosis pregnancy as well as those who may be recently bereaved.

A Catholic organization with local chapters at parishes all across the United States. This ministry is devoted to assisting women through issues surrounding pregnancy and childbirth, including poor prenatal diagnoses.

Cubby LaHood and Nancy Mayer-Whittington founded Isaiah's promise, a special support for parents in the D.C. area who have learned their unborn baby has a poor or fatal prognosis. Both women have lost a baby due to fatal syndromes. Mayer-Whittington is author of "For the Love of Angela", a book we highly recommend and LaHood, with her husband, has run a daycare and respite home for children with disabilities. D.C. area moms, you could not be in better hands!

A Catholic ministry that offers support for bereavement surrounding pregnancy and early infant loss. MLM offers a wonderfully written booklet to parents facing a poor prenatal diagnosis titled, "Hope in Turmoil". They welcome parents of other Christian denominations, other faiths and parents of no religious affiliation.

"My Child, My Gift" is a great place to visit. You can find out about a book to be released in the Spring of 2008, look over suggested links for various helpful orgs, and post a prayer request . . .and more, on the forum. We highly recommend this site to expectant parents.

An outreach for those who expect baby to die upon or shortly after birth, Pieta Ministry serves those in the diocese of Metuchen (New Jersey) and via internet or telephone to those outside the region. Pieta Ministry is a special subset of Elizabeth Ministry, also listed in our resource section.

A group we personally recommend and work closely with. PPFL will help mentor a newly diagnosed family, whatever the baby's diagnosis, prenatally or postnatally. PPFL is based in Minnesota, but their mentoring families are in many states and can assist by telephone, email, and if possible and appropriate, in person.

Our friend, Jessie, lost her daughter to a genetic kidney and liver disease, but she gained so much from the experience of knowing and loving her baby girl, that she felt compelled to help parents going through a similar situation. Remi's Gift features information about a specialized birth plan, insights about grief, and many tips to help parents make the best of the time they will have with their baby.

A Catholic contemplative/active religious order dedicated to protecting human life and advancing a sense of sacredness of all human life. Contact them by phone or mail for prayer support.

String of Pearls will help families facing a fatal diagnosis in a variety ways. Importantly, they will help coordinate the different modes of care that parents and babies will need before and after birth. While some of us can help you find the moral, peer, and informational support you will need, String of Pearls will pull things together so that nothing important falls through the cracks.

Focus on the Family offers a packet titled "When Love Wins": Helpful Information About An Adverse Pregnancy.

A beautiful film about baby Eliot, born with trisomy 18. You won't regret spending 6 minutes of your time to watch this.

"A Trisomy 18 Journey" is Mindy Wilsford's information rich resource for parents who receive a Trisomy 18 prenatal diagnosis. She presents her experiences carrying her baby Abigail to term, losing her soon after birth, and the grief and insights that followed. Also onsite, parents will find information about the syndrome, a discussion about misconceptions regarding termination and the carrying to term experience, birth plan suggestions, and other necessary resources.

A website dedicated to sharing the life of baby Claire, who was diagnosed in utero with trisomy 18. An excellent source for those who wonder what life may be life if their baby with trisomy 18 survives!

A new "trisomy-united" organization meant to build hope for better outcomes by supporting research, encouraging families, and honoring the lives of children diagnosed with trisomy 13 or 18. Hope for Trisomy 13 and 18 is also the new home of Gemma's Bears, a gift from the heart of one mom to those carrying babies diagnosed with trisomy 13 or 18.

Chris and Grace Anne's story is featured in the stories section of our site, but if you would like to learn more about the brief but cherished life of Grace Anne, please visit her website. You can view more pictures than we were able to share here, as well as listen to Grace Anne's very own touching song, provided by Songs of Love. Also featured is Chris' birth plan.

A new and completely life-affirming support and information site for parents who are expecting a baby with Trisomy 13, " focused on prayerful support and gifts of love to those touched by a Trisomy 13 child".

This organization, founded by a mom who carried her prenatally diagnosed child to term offers some assistance to those in her region, as well as information and family contacts for those facing a trisomy diagnosis.

A support, education, and awareness organization for parents of children (and for those expecting children) born with trisomies and related chromosome disorders. Watch this new organization blossom -- help this organization to grow over time by contacting them if you are in need of support, and donating to them if you would like to offer support!

Kurt and Maria graciously share their story as well as pictures of their brief time spent with baby Rosalie, whom they knew would be born with Trisomy 13 and associated defects. Read about how these parents decided to tell their older daughter about Rosalie.

S.O.F.T. (The Organization for Trisomy 18, 13, and other Related Disorders) provides professional medical literature and family support and contact opportunities for those facing a rare trisomy diagnosis.

This text presented by the organization's founder (thank you, Mr. Schlager!): TRISOMÍA 18 is a new organization that will be a foundation in a short time. Our goal is to change our society in order to recognize that the children with Edward's syndrome are alive and that they deserve all the personal and medical care to provide the best possible quality of life, respecting their humanity. We are helping the families that contact us to do so, and on the other side, we are building a medical community with a fresh and open mind about trisomy 18.

TRISOMÍA 18 ES UNA ORGANIZACIÓN NUEVA, QUE SERÁ FUNDACIÓN EN EL CORTO PLAZO.
NUESTRA META ES CAMBIAR NUESTRA SOCIEDAD, TAL QUE SE RECONOZCA QUE LOS NIÑOS CON SÍNDROME DE EDWARDS ESTÁN VIVOS Y QUE MERECEN TODO EL CUIDADO PERSONAL Y MÉDICO PARA DARLES LA MEJOR CALIDAD DE VIDA POSIBLE, RESPETANDO SU HUMANIDAD.
ESTAMOS AYUDANDO A LAS FAMILIAS QUE NOS CONTACTAN A HACERLO ASÍ Y ESTAMOS FORMANDO UNA COMUNIDAD MÉDICA CON UNA VISIÓN FRESCA Y ABIERTA RESPECTO DE LA TRISOMÍA 18.

A retrospective study of survival rates of children diagnosed with Trisomy 13.

Janina Arritola's baby son Anthony was diagnosed in utero with trisomy 13. Her family website documents their experiences with Anthony divided into distinct "phases". While no one can take away all of the fear and anxiety that comes with this type of diagnosis, Janina's step by step approach will help parents find their footing in otherwise unkown terrain.

Valerie carried her twins, Julia and Gina, after Gina was diagnosed with life-threatening defects. Her experience with her daughters coupled with her devotion to Christ and Christian principles are the foundation of a ministry that is sure to encourage, console, and even help to heal the heart of a mom going through a difficult prenatal diagnosis involving twins.

The mission of FHF is to help families dealing with a fetal syndrome (such as twin-to-twin-transfusion syndrome) find accurate information and assist them in finding the professionals who can help them fight for their babies' lives.

The International Institute for the Treatment of Twin to Twin Transfusion Syndrome is directed by Dr. Julian E. De Lia, pioneer of fetoscopic placental laser surgery, a treatment which dramatically increases the odds of a good outcome for both twins.

Visit a message board to talk with other parents. Read about treatment options such as Serial Amniocenteses and Fetoscopic Laser Placental Surgery.

Watch parents talk about their babies' diagnoses and the hope they found throught the TTTS Foundation. Check out the "Get Educated" section for frank, "cut-to-the-chase" assessments of options that some parents are given - the good and the bad, and walk away with hope and and information you can act on!