Pregnancy Issues: Limb Body Wall Complex

Limb-body wall complex refers to a rare combination of disruptive and lethal abnormalities which start early in the gestational process. Abnormalities commonly associated with this disorder include cranio-facial abnormalities, scoliosis, ventral body wall defect (thoraco-abdominoschisis), limb deformations, short umbilical cord, and others. Other terms used to describe similar findings include short umbilical cord syndrome, body-stalk anomaly, and amniotic band syndrome. The causes of this disorder are not fully understood. This syndrome should be better known and it has a good prognosis for a later pregnancy because there is no reccurence.

Most fetuses are aborted, either spontaneously or by medical means. Most of the remaining are stillborn. Postnatal survival for a significant duration is extremely rare, but at least one such case is reported; the child has severe physical handicaps.

Though limb defects are present in the vast majority of cases, absence of a limb is seen in less than a tenth and upper limb involvement is uncommon. The absence of the left subclavian artery with the absence of the corresponding upper limb as in our case seems to favor the vascular disruption theory.

Antenatal diagnosis is usually made on ultrasound examination. Serum alpha fetoprotein levels are often elevated. The importance of early antenatal diagnosis in this severe condition with a poor prognosis lies in differentiating it from an isolated gastroschisis, which has a much better prognosis. Early diagnosis can be followed by medical termination of the pregnancy.

For more indepth information, please check out the references from which the information above has come from. We have included a parent's view of limb wall body complex syndrom.

Kaitlinswish learned about this through an Angel Baby's family. Here is their story...

Cassia's Little Angel Baby

"Hi, my little girl had a condtion called Limb Body Wall Complex, it's where when the cells are dividing in the very beginning the placenta does not break off so the baby is attached. At 20 weeks we went for our ultrasound very excited to find out what we were baby would not cooperate so the tech went on with the ultrasound, I thought my baby was just being stubborn.

The next day my doctor called me and said she'd like to talk to my husband and I as there were some anomalies with the baby. So broken we went to her office and she explained that the bowels were on the outside of the baby, which isn't too uncommon we came to find out, then she said that what concerned her was there were spots on the baby's brain. So she sent us to Women and Infants Hospital Maternal Fetal Medicine for a Level 2 Ultrasound where it was confirmed that the baby had LBWC. This entailed her organs being on the outside from her chest cavity down to her bowels, one of her arms had not developed and part of the skull had not closed, at birth we found out the skull had not closed because that's where the placenta had attached.

However she had perfect legs and feet, she had the downy hair on her legs, and she had hair as well which was about an inch long. They of course had to give us the option to abort the pregnancy but with our beliefs and having seen her heartbeat and having her heard it as well we felt we couldn't or we would have been the ones to end her life and we couldn't do that. She had the strongest heartbeat til the day she was born and it wasn't until my water broke, that her protection was gone that she passed away.

From what the doctors know it is not genetic, they likened it to being struck by lightning that's how rare the condition is. She was a fighter til the end I tell you and I like to think a bit of a rebel, her hair grew in a mohawk and she entered the world butt first, which makes me smile. My family has always told me I have attitude so I like to think she got that from me. So yes it can be diagnosed early on, we however chose to end her life, but to carry her as far as she was going to make it on her own. I was able to feel her strong precious kicks against my bladder :) and all over my stomach and loved each kick. I am glad for every moment we had with her and her daddy and I love her everyday even tho she's gone. She'll be our little girl forever. "

Please note, we at Kaitlinswish did not edit the message as it came from a little angel's mommy. It is her words, her kindness to share her angel baby's story with us all.


Angels Remembered

News & Events

Kaitlin's Promise: At Kaitlinswish, we understand that life can sometimes be frightening and unpredictable. The time with doctors and other professionals can be one of those times. To help with this, we ask that everyone reading this make a personal Promise to help guide one at this time.

Kaitlin's Blog: At Kaitlinswish, we believe all angel babies and children should be remembered one way or another. We have added a blog to share events and other news.