Liam's Condition

During a routine visit to the doctor at 19 weeks we learned that Liam has myelomeningocele, a form of spina bifida.  This form of spina bifida is the most common but also the most severe.  What this means is that is his spine did not fully close early in development and he has an opening at his L2 or L3 vertebrae in his back. Part of his spinal cord is floating in the sac of fluid that is covering the opening. The fluid filled sac is pulling his brain down farther out of its cavity and into the spinal canal which will eventually cause fluid to develop around his brain. If the pressure builds up too high, this can bruise and damage the brain.  Shortly after his birth Liam will need surgery to close his back and to place the spinal cord in the correct location. He will also more than likely need a brain shunt to be put in place as well to remove the excess fluid that will be build up over time. Unfortunately, this is a life-long condition that Liam will have to face since there is no cure. Right now the doctors are saying that the nerves that control everything from his knees down are damaged (because of the placement of his opening) and the likelihood of walking one day with braces and arm crutches is about 20%.  The doctors are also uncertain if he will have control of his bladder/bowels and will put a treatment plan in place if not. It will take a couple of weeks after his surgery to determine exactly what movement, if any, he may have in his legs. The bladder/bowel control should be evident very early on.

We were devastated and heart broken by the news but quickly learned that we are not alone. The amount of support from our families and friends has been completely overwhelming. We keep reminding ourselves that God does not give us more than we can handle and that will get us through whatever obstacles and challenges that may arise.

We have been fortunate enough to be patients of the Children's Hospital of Philadelphia (CHOP) where Liam will recieve first rate care in a national ranked hospital. Allison is seeing both doctors in Roanoke and Philadelphia to monitor the progress of Liam and to make sure she is staying healthy as well. During the first visit to CHOP we both felt that this was the best place for Liam to be and where he would receive the best care possible. It will be hard to be away from home and everything that is normal to us but we will do anything for Liam and this is where he needs to be once he is born.

Allison's due date is November 2nd. However, we will travel to Philly sometime in the beginning of October and wait to have an elective c-section somewhere around week 37 or 38. Liam will remain in the NICU for a couple of weeks before we will finally be able to head home.

Liam at 24 weeks

At our 24 week appointment Liam's brain still did not have excess fluid and looked like any other "normal" baby's brain. Liam also still has movement in his legs and feet and moves around all day long inside of Allison. The doctors at both hospitals have told us that around 24-28 weeks the movement slows down and the fluid tends to build up. Essentially, the longer the spinal cord is exposed to the amniotic fluid, which is toxic to the spinal nerves, and the more physical trauma to the spine the more damage that is done. The doctors eventually expect his legs to turn clubbed and for fluid to be on his brain by the time he is born. Right now we are just happy that so far this hasn't happened.

We feel blessed to have Liam in our life and are looking forward to all the memories we will make as a family. We are looking forward to celebrating with our family and friends during our upcoming showers.

We both want to thank everyone for all the prayers and well wishes that we have received over the last couple of weeks. We feel very loved and know that Liam is one lucky kid to have this kind of love already heading his way. We can't express in words what all the calls, cards, and well wishes have meant to us. Please continue to pray for us and Liam as we travel on this journey together.

We will share more once we come home from our August 15th-17th trip to CHOP.