Limb Body Wall Anomaly
What is Limb body wall anomaly? There is not a lot of information on limb body wall anomaly. There are a few different names for this diagnosis, the other ones are limb body wall complex and body stalk anomaly.
Limb body wall complex (LMWC) is a condition characterized by multiple, sever congenital abnormalities in a fetus. It normally results in openings in the anterior body wall, for example, the chest or belly, and defects on the limbs. Other features of LBWC may include facial clefts, short or missing umbilical cord, scoliosis, neural tube defects, club foot, an omphalocele, and abnormalities of organs such as kidneys or bladder.
The exact cause of LBWC is unclear. According to research, there is no cure for this diagnosis and it is considered fatal.
Besides Oakley, there have been two other reported cases of LBWC survivors. One survivor is in Japan, the other in India.
When we were in London hospital, the genetics doctor told us that she has worked in that hospital for 9 years, there have been 4 reported pregnancies that were diagnosed with LBWC but only one brought to life, Oakley, the other three pregnancies were terminated.
Since Oakley is the first baby with this condition, the doctors are basically learning off of him to have further reference when other pregnancies come along with this condition. They told us they didn't know exactly how to help Oakley because they had never had a baby like this in that hospital before.
What is an omphalocele? This is a condition where the organs form inside of the umbilical cord but on the outside of the body. In Oakley's situation, his omphalocele included his liver. At first they told us that he would be needing to do surgery within the first 24-48 hours to bring the liver back into his body. Once Oakley was born and the surgeon saw the omphalocele, she then decided to not do surgery and let the omphalocele heal on its own. She told us that with using daily burn cream and wrapping it with medical wrap, it could take up to two years for the liver to slowly move back into his body. Oakley is now just over three months and the liver is about 90% back into his body and healing very well.
In closing, there really is not much information at all on the LBWC, we are taking is day by day and praying constantly that Oakley will continue to fight and heal! We are always ready to personally answer any questions that you have have on LBWC.
LBWC is considered fatal and doctors only recommend abortion, but we did not do that and we have such a little blessing in our lives now! We are hoping that Oakley's story will encourage other parents going through this type of situation to hold on to the pregnancy and give that little growing baby a chance, the doctors may say that LBWC is fatal, but there have not been many chances to prove this wrong.