Baby Girl Lewallen's Journey with Spina Bifida
Organized by: Conley Family
On June 8th, 2016 Nicole and Steven were excited to find out the sex of their new baby and didn't know they would also be hearing some devastating news. During the anatomy ultrasound of baby girl Lewallen, the doctor noticed some fluid on her brain and Nicole was sent to a specialist to have a more thorough ultrasound. Unfortunately, their baby girl was diagnosed with Spina Bifida.
Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. Baby Lewallen has been diagnosed with the most severe form of Spina Bifida called myelomeningocele, also known as open spina bifida. Associated problems could include inability to walk, difficulty with bladder or bowel control, hydrocephalus, a tethered spinal cord, and latex allergies. The Spina Bifida can be anywhere on the spine and baby Lewallen's is on the L5 and S1, which is her lower spine.
Nicole was presented with the option of having surgery on the baby while in utero. This surgery can help increase the chance that she will have the ability to walk and decrease the possibility of her needing a shunt in her brain along with many other advantages. This surgery is only offered at a handful of hospitals in the country so Nicole will be flying to San Franciso to receive the surgery at UCSF Benioff Children's Hospital. They leave July 11th and will spend three days there while the doctors complete various tests on her and the baby. If the testing goes well they will be admitted to the hospital on the 18th and have surgery the 19th. Nicole will be in the hospital for a minimum of 5 days and will have to stay in SF for a month so that she and the baby can be closely monitored. There is a possibility that she will have to stay there for the remainder of her pregnancy if any complications arise.
I'm sure you can understand how challenging this is going to be for Nicole and her family. She has 3 children and a job that she will be forced to leave during this time. It is not safe for Nicole to be alone while she stays in SF so all of us will be taking turns helping her here in Arizona with her kids and rotating flying out to stay with her.
This is something that no child or family should ever go through but, with the support of their family and friends we will get through this together. We appreciate any prayers and support. As you can imagine, this is going to be incredibly financially challenging. We're hoping that if you help us share this that we might be able to raise money to help with the cost of medical and living expenses for their family during this difficult time. Any help at all is greatly appreciated! Thank you and God bless.