WE live, WE love, WE are forever changed after having a child with Patau Syndrome ~ Trisomy 13.
WE are the families, Our hearts have embraced these precious babies. With Dignity and Grace we each hold Our Child, Peacefully in Our Arms.
WE are inspired to love more, live better and share this very unique life journey. We've had a genuine encounter with pure love, WE are blessed. We've experienced the transformation of grief into “Thanksgiving Joy."
Trisomy 18, Trisomy 13, Edwards Syndrome, Patau SyndromeTRISOMY.org Have you visited the SOFT Support Organization for Trisomy 18, 13 and Related Disorders website recently? Many new web site additions and features. A NEW quick 'SHARE this page' app that allows you rot share on Facebook, Google+, Stumble Upon, Blogger, Twitter, Pinterest, Linkedin, Reddit, WordPress and email.
Be sure to view the HOME page and scroll down viewing the many areas of information. FREE NEW Family Information Package, Trisomy 18, Trisomy 13 and other Trisomy Related Disorder Information. Surgery and Growth Charts, and Medical Literature. A wealth of resources. Trisomy Disability Awareness Events and Activities coming up for Trisomy Awareness Month 2014 www.Trisomy.org
2013 National Health Observances March 1 – 31 Trisomy Awareness Month Support Organization for Trisomy 18, 13 & Related Disorders www.trisomy.org 2982 South Union Street Rochester, NY 14624-1926 (800) 716-SOFT -7638 (585) 594-4621 (585) 594-1957 Fax firstname.lastname@example.org www.trisomy.org Materials available Contact: Barb Vanherreweghe
There is HOPE within these images of trisomy kids with developmental disability. With each video, photo, website, facebook page, families are finding support. 2013 will be a wonderful year filled with Trisomy & Developmental Disability Awareness.
support is wonderful knowing there are others who have experienced this
journey from prenatal, to living, to grief. *However, it does not
replace the much needed Face to Face GRIEF support. *Please check with
your local Church for the local available grief support. Most Church
Communities have something set up, and do check a few if one does not
interest you or meet your needs. *The MISS Foundation may be able to
help you get started. Here is their facebook page https://www.facebook.com/missfoundation Here is the website and the grief meetings on a map, contact them and they will be able to help you get connected locally. http://www.missfoundation.org This page will help you find your local state and area. http://www.missfoundation.org/support/groups MISS Foundations Support Groups
Nationally - Internationally - Online
The author recommends a balanced approach to counseling families of the newborn with trisomy 18 and 13 at the time of diagnosis. The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communication of developmental outcome that does not presuppose perception of quality of life, and respect for the family’s choice, whether it be comfort care or intervention.
On May 17, 2011, Lilliana Dennis was born to Rhonda and Russell Dennis. But just a few hours after her birth, she was taken for testing that confirmed she was born with Trisomy 18. T18 is a chromosomal anomaly that results in an extra chromosome and has a high mortality rate. In fact, over 90% of babies born with T18 don’t live past the first year. Because of the high fatality rate, most doctors will not offer any treatment options.
After doing research and finding people who were living with T18, Rhonda and Russell decided to advocate for their daughter’s care. As a result of Trisomy 18, Lilliana was born with a large hole in her heart that would eventually affect her longevity. After seeing doctors who refused heart surgery, they met Dr. Sanjay Parikh, a pediatric cardiologist at St.Vincent Health in Indianapolis, Indiana.
Dr. Parikh agreed to do whatever it took to ensure Lilliana had the surgery. But he had trouble obtaining the consent of all the doctors who would be involved in her care. Rhonda and Russell went in front of the hospital’s ethics committee to plead their daughter’s case. After making a strong argument for their daughter’s future, the committee consented for Lilliana to have the surgery.
Lilliana just celebrated her first birthday and is improving every day. Taking care of her requires a lot of hard work and patience, but Rhonda and Russell can’t imagine life without their baby girl. There’s no question that a bias against Trisomy 18 exists within the medical community. But hopefully more stories like Lilliana’s will pave the way for change.
PhotoNoah's Never Ending Rainbow (facebook)The mission of Noah's Never Ending Rainbow, a national Trisomy organization, is to educate, advocate, raise public awareness, promote strategic alliances. Trisomy Families Favorite Annual Conference - Prenatal - Postnatal Genetic Resource SOFT trisomy.org
An ethicist who was not involved in the study says the findings point to a need to change the messages given to parents-to-be and new parents facing the reality of a baby with T13 or T18, as the conditions are called for short.
"This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation," says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax.
"The negative narrative needs to change. Parents' experiential knowledge matters and should be available to expectant parents and new parents."
The study, by ethicists and the mother of a child born with Trisomy 13, is published in this week's issue of the journal Pediatrics. READ MORE
Keith Barrington, a neonatologist and clinical researcher comments on the latest Journal Publication in Pediatrics
"Our children are not a diagnosis": the family experience of trisomy 13 and 18(click here)*Be sure to view the 75 + Plus comments. Annie Janvier, Barb Farlow and Ben Wilfond have just published a rather disturbing study. At least I feel a bit disturbed. (Janvier A, Farlow B, Wilfond BS: The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics 2012.) It is one of those studies that challenges many assumptions. They set up an internet questionnaire and contacted parents of infants with trisomy 18 and trisomy 13 who belonged to various internet-based support groups.
"So here are some guidelines to use when talking with parents who have received a diagnosis, prenatal or postnatal, guidelines that you could develop as a result of these families’ reports of their experiences: ...."
_______________________________________ In a time where we are being bombarded by Healthcare NEWS, Genetic Medical Ethics - Bioethics with Prenatal Testing and Screening, its wonderful to see the potential of these kids. Living Survivors with Trisomy Genetic Syndromes.
A special Thank You to Giuliana's Mother who has helped get 3 Large Billboard's up - Celebrating the lives of these Trisomy 13 and 18 kids. This weekend families from all over the world are meeting for the largest Annual Gathering of Trisomy Families. Sharing their trisomy health experiences.
The SOFT Times
Its wonderful to receive this quarterly newsletter in the mail with wonderful articles, insights, and the many outreach efforts SOFT has provided for Trisomy Families for over 25 Plus years.
In this issue Gifts of the heart from Kris Holladay, founder Almost Home, a book review by Pam Healey Dr. John Carey's Professional Viewpoint Coming Home to SOFT by Bob Irvin The Medical Intervention Debate by Pam Healy Trisomy Family by Debbie Brunes
As the LWT13 site moves forward with a new team and their non-profit efforts to help lwt13 families its really nice to keep connected with the Global Information Hub that brings all Trisomy Rare Disorders together with this newsletter and yearly Conferences (which is also noted in this Newsletter) 2012 SOFT Conference will be held in St. Louis, MO July 18-22
Life News Provides our Trisomy Families with HOPE within their up to date articles.
Yes ~ There is a better Choice - with advances in Technology, and Support, Trisomy 13 (Patau Syndrome) Families can move through this unique season of life with their precious child within their loving arms.
“There is ample biologic, physiologic, hormonal, and behavioral evidence for fetal and neonatal pain,” Prof. Malloy told the committee. “In fact, by 20 weeks post-fertilization (22 weeks by LMP),[i]the fetal brain has the full complement of neurons that are present in adulthood.”
Under later questioning, Prof. Malloy confirmed that the ability of the fetus to feel pain was the “majority view” of those in the field of neonatology.
Perinatal hospice families who choose to carry their pregnancies in which the fetus has a lethal condition possess many of the same characteristics of families with a terminally ill adult or child, a clinical scenario in which hospice has been well accepted and a useful method of care. Many of the hospice principles were successfully applied in perinatal hospice. The emphasis is on affirming life by care for the loved one, yet regarding dying as a normal part of life. A conscious effort is made to neither hasten death nor prolong dying. The team stresses values beyond the mere physical needs of the dying individual and allows the parents to “parent” their child for whatever time they are allowed. The family is supported in their medical, emotional, and spiritual needs through an organized, multidisciplinary team that cares for them after the death of the loved child during the period of grief.
The care in perinatal hospice differs in emphasis, but not in type of care from other modes of perinatal care. Its primary focus is on the family — not the fetal diagnosis and attendant anomalies. The family is placed in the center of the care and there is a continuum of support from the diagnosis, through death, and grief. As Amy Kuebelbeck, author of Waiting with Gabriel,(21) a book about her own experience with her son who had a fatal form of hypoplastic left heart, notes, “I know that some people assume that continuing a pregnancy with a baby who will die is all for nothing. But it isn’t all for nothing. Parents can wait with their baby, protect their baby, and love their baby for as long as that baby is able to live. They can give that baby a peaceful life – and a peaceful goodbye. That’s not nothing. That is a gift.”(22)
LIFE NEWS National State International Bioethics Opinion
Trisomy 18 and 13: More children are surviving Study shows children with disorder are surviving to older ages.
Trisomy 18 is a rare genetic disorder that is considered fatal, but according a new study, there may be hope for the children affected. Dr. Shawn McCandless, Director of the Center for Human Genetics at University Hospitals Case Medical Center in Cleveland said that the treatment and care of the children with Trisomy 18 and 13 may impact their ability to survive. “We don’t know how well these kids can do until we give them every opportunity to do their very best,” he said. (Danielle Adams – collegenews.com)
The SOFT Times newsletter has helped connect families for nearly three decades. Letters from families and articles from professionals are compiled, edited and printed in a quarterly newsletter, which is mailed to SOFT members who have paid their current yearly membership fee, and to professional members. Read More on the SOFT website
This is a wonderful video, There is good online internet support in 2012 PLUS Trisomy Families can connect with with eachother on Facebook as well as Yahoo Groups. _____________________________________ This is a very basic video about Chromosome Disorders. It talks about what Chromosomes are, different types of disorders, and basic Q&A for families with a new diagnosis. Questions answered are: What is a geneticist, and what do they do? Why does a child see a geneticist? What should parents do when they receive a confirmed diagnosis? Why bother with genetic testing? ______________________________________ Are you Looking for the Best and Most Frequented Family Support for Carrying to Term a Trisomy 13 or Trisomy 18 child? Families who are informed and share how they manage their trisomy baby or child's daily health and medical issues from daily need to medical intervention and in some cases surgeries.
SOFT USA Support Organization for Trisomy 18, 13 and Related disorders
We have been following a very interesting conversation via the internet. It is between three people, all of whom we respect a great deal.
It began with anarticle, written by Monica Rafie and Tracy Winsor, in which they discuss the national Down syndrome organizations', NDSS and NDSC's, stance to remain neutral on the issue of abortion of babies who have Down syndrome. Monica and Tracy had suggested that the national organizations embrace "a simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome."....
..."In fact, we hope you will read all of the articles. In this respectful dialogue, all three have brought to the table very good thoughts on this issue. It is a conversation that needs to happen, as we are at a crossroads in this part of advocacy. The new test is looming. Insurance company's are partnering with the corporations that are making the test, while at the same time, the government has a mandate that is in place, ready to roll. We have no other choice, but to discuss this."
Today women who are pregnant have many things to consider when making prenatal decisions with early noninvasive prenatal tests and newborn screening tests for their precious child. New tests searching out developmental disability and the concern for infant mortality statistics have filled the news in recent years. Women and families have more online options to get well informed within support network groups so they can, and in many cases, making decisions that are best for their babies unique medical condition. Each child can, could and should be treated on a case by case basis, the Treatment varies from child to child and depends on the specific symptoms. - ThereseAnn, Mom to Natalia
***Concluding statement of 12-year American major national study of interventions on children with trisomy 13 and 18:
"Because we are currently unable to identify which children might be long-term survivors, universal application of the term lethal to the diagnosis of trisomy 13 and 18 is not appropriate."
BACKGROUND AND OBJECTIVE: Trisomy 13 and trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year after birth. The inpatient hospital care that these patients receive has not been adequately described. This study characterized inpatient hospitalizations of children with trisomy 13 and trisomy 18 in the United States, including number and types of procedures performed.
CONCLUSIONS: Children with trisomy 13 and trisomy 18 receive significant inpatient hospital care. Despite the conventional understanding of these syndromes as lethal, a substantial number of children are living longer than 1 year and undergoing medical and surgical procedures as part of their treatment.
"Study author Dr. Chris Feudtner said the analysis, published today in the journal Pediatrics, shows that the conventional thinking that the disease is lethal is not totally accurate." ..."the study reflects a shift in philosophy on how to treat children who have such severe genetic disorders." ..."Thankfully, this has changed in recent years. Not only do some of these children survive, they survive with a pretty good quality of life," Marion said." ..."A similar trend happened in the 1960s and '70s for children with Down syndrome, who were once thought to be disabled beyond hope." ..."We don't know how well these kids can do until we give them every opportunity to do their very best," McCandless said."