As many of you already know, six weeks ago we found out some great news and some not so great news. We learned the gender of our baby...boy! but also that we will be facing some unique challenges. Our baby has a birth defect called Spina Bifida.
Spina Bifida is a neural tube defect that occurs very early in the pregnancy (before 28 days). The spine is supposed to close similar to a zipper. When the "zipper" fails to connect at some of the teeth, the spinal cord is exposed usually resulting in nerve damage. The opening in the spine can occur anywhere. Generally the lower the lesion, the better. The nerve damage can cause a variety of results in people with SB as far as their mobility is concerned. Some people can walk with leg braces, and others experience paralysis and are in wheelchairs. It is rare that individuals with SB have control over their bladder and bowels so most of these individuals are catheterized.
80-90% of babies born with SB experience Hydrocephalus in the brain; an irregular amount of fluid build-up in the ventricles of the brain. The fluid is drained through a surgically placed internal shunt, or a tube, draining the fluid from the ventricles into the stomach. Monitoring the shunt becomes an important routine. Shunts can become infected or clogged causing shunt failure. If the shunt fails, surgery is required. Some individuals live their lives only needing a few shunt revisions, while others undergo hundreds.
Our Baby's Specific Case
The lesion on our baby's spine is in the sacrum/L5 area. This is the lowest area on the spine which is usually good. We probably won't know the extent of his abilities to walk until after he is born and at the walking age, although the day he is born they will begin testing his legs for signs of sensation. The doctors have scheduled a C-section for our baby on Jan 6; about 4 weeks early. They want to remove him as soon as his lungs are ready so that they can begin operating on his back. He will be born in the morning and then his surgery is scheduled for that afternoon. During his surgery they will remove any cystic areas (caused by spinal cord leakage) and close his back using surrounding skin.
Currently there is not enough fluid build up (hydrocephalus) in the brain for a shunt, but most of the time the hydrocephalus occurs after the back surgery. They will monitor him to determine if a shunt is needed throughout his hospital stay (6-14 days).
How You Can Pray for Us...
We are always praying for healing and also that we can accept God's will whatever He has in store for us. The main areas of our prayers include three categories: We pray for his ability to walk. We pray that he will not need a shunt, and we pray that he will be in the rare category of having bladder and bowel control.
These past few weeks have been quite overwhelming, but we have felt all the prayers on our behalf and have received immense support. Recently we were connected to another couple, Leigh and Andy, facing similar challenges. Leigh and Andy are having a baby boy with SB also in January. They also happen to live right down the street from us! Our new friendship with them has been very encouraging; things seem a little less lonely.
Ultimately, we are extremely excited to finally meet our new baby and we know he will be a blessing no matter what!