There are a few confirmed survivors who were prenatally diagnosed with LBWC. We even have some in our Facebook Group!
Here is Oakley’s Miracle. He surprised his whole family and continues to surpass their expectations every day!
There are also families who keep their children’s stories private, but whom we can connect you with if you have questions. These are all medically documented cases of LBWC, in which the children survived.
If you have a child with a uniformly fatal defect, such as exencephaly, you may want to read our information about hospice/palliative care. Unfortunately, these defects have been found to be untreatable.
The few survivors of LBWC are children who have individual, correctable defects, and who minimally fit the criteria for LBWC- with no open neural tube, severe cephalic or cranial issues. Most commonly these cases present themselves with the abdominal wall defect being the biggest hurdle that the child faces.
Here are two stories of documented survivors of LBWC, living in Japan. For those interested in learning more about their specific cases, here are the links to medical journal abstracts relating to these two cases:
Long Term Survivor of Body Stalk Anomaly- a Case History
A Case of Body Stalk Anomaly Under Home Ventilation Support
Here is an article which mentions four documented survivors, also in Japan
Here is an article which features a female child with an unusual manifestation of LBWC, with a smaller abdominal wall defect.
A study which mentions a living child with LBWC— note, photo included.
WARNING- VERY GRAPHIC PHOTOS IN THE FOLLOWING LINK
Note- child has gastroschisis, not an omphalocele, which most likely makes survival possible
Blog entry (with photos), by a Russian medical student, featuring a living child with LBWC.
It is extremely important for you to seek a second opinion regarding your child's diagnosis. The prognosis for an isolated omphalocele is very good, however many medical professionals still tend to assume that there is a genetic issue involved as soon as they see one.
In addition, there are a number of children which we have discovered over the years, with LBWC-like disorders who have been diagnosed with "syndrome unknown". The sole reason which physicians decline to diagnose them with LBWC is the fact that they survived birth.
Be an advocate for your child- in either the instance of speaking up when you believe that treatment may benefit them, and also in guarding them when you believe that prolonging treatment may cause unnecessary suffering.
There are also stories of children with similar defect constellations, who haven't been diagnosed with LBWC. You can find them listed on sites which specialize in: multiple birth defects, amniotic band syndrome, omphaloceles, gastroschisis, and spina bifida.
For those parents who are awaiting a baby with no uniformly fatal defects, and who are considering surgical intervention, these stories are a tentative roadmap of where you may be traveling.
Again- these children have not been diagnosed with LBWC. We have only included them due to the fact that they loosely fit the criteria for the minimal presentations associated with LBWC (abdominal wall defects with either a limb deformity or a craniofacial deformity), or because they have been diagnosed with a syndrome that is a differential diagnosis for LBWC (OEIS or Pentology of Cantrell).
The links to a couple of remarkable miracle stories are here:
Aidan's Story- Aidan was born with undiagnosed Pentology of Cantrell, a birth defect which is commonly mistaken for LBWC, and which there are very few survivors of. Some doctors consider POC to be a lethal diagnosis as well.
Ellie's Story- (and another place where her parents tell all about her)- Ellie was born with OEIS complex. This is another birth defect which is given a very poor prognosis, and shares marked similarities with LBWC. A number of our moms who thought they were carrying LBWC babies, ended up receiving a diagnosis of OEIS complex after their babies were born.
(all stories have been shared with the permission of the parents involved- we have found many more stories of miracle children who have multiple defect complexes- some who could be considered to have milder cases of LBWC. Unfortunately we have not been able to directly connect with those parents to ask for permission to share their children's stories here. We found them through normal search engines, with diligence. You can too!
We hope to link to more stories in the future, when we receive permission from each child's family.)
All material on this site reflects our personal journey with carrying a pregnancy to term with a prenatal diagnosis of Limb Body Wall Complex, aka Body Stalk Anomaly, aka Short Cord Syndrome, aka Cyllosomas. It is not meant to replace any medical advice of any professional familiar with you/your child's specific condition(s). The personal stories of any parents on this site are only their opinions and their own experiences of carrying to term with the above named condition. You should consult with your/your child's own physician(s) and/or other medical professional regarding the opinions and/or recommendations expressed within these pages as to you/your child's own medical condition. Copy write information All personal stories, letters, descriptions, & disclaimers included in this website are copywritten. Please do not copy, cut/paste, etc. any information that parents may have generously contributed to our site. You may email us at email@example.com for permission to utilize any information here. We will gladly give it to anyone hoping to increase awareness. All information copied without the permission of the owners will be considered piracy, and we will seek legal redress. The stories told here, and the information included is sensitive. Families have been so generous in sharing their babies with us. We will not tolerate any family being taken advantage of. Thank you for respecting this.
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