Soon after the original ultrasound, they were sent to Women’s and Children’s Hospital in Columbia, MO for a day full of appointments. This was a day they will never forget… a day when devastating news was given that was followed by confusion and heart ache. On August 31, 2017, Chris and Joni were told their sweet little boy, Jackson, has Spina Bifida. Spina Bifida ranges in severity, but unfortunately Baby Jackson was diagnosed with the most severe form of Spina Bifida, Myelomeningocele. Myelomeningocele is a severe form of spina bifida in which the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common. Many babies with myelomeningocele will also have hydrocephalus, a condition that causes the fluid inside of the head to build up, causing pressure inside of the head to increase and the skull bones to expand to a larger than normal size.
Because of the severity of the diagnosis, Joni and Chris were referred to St. Louis Children’s Hospital to learn about options. On September 12, 2017, they were told Joni and Baby Jackson were candidates for a very high-risk in utero fetal surgery. Even though the surgery is high-risk, the benefits and quality of life improvements outweigh the risks. They are putting every fear behind them and moving forward with one goal in mind; to give their precious Baby Jackson every possibility of having as normal of a life as possible while putting their own lives on hold. The decision was made, without hesitation, to move forward with the in utero fetal surgery. This will possibly give Baby Jackson the chance to walk independently, reverse any neurological issues, and possibly not require a shunt for the hydrocephalus.
The in utero fetal surgery is a five-hour surgery. The surgeons will open Joni’s belly and uterus to gain access to Baby Jackson. They will then repair and close the opening of the spinal cord. Once finished with the repair, Baby Jackson will be tucked away back into Joni’s belly to finish developing and growing. Joni will be on strict bedrest for nearly a month to prevent any re-openings post-surgery in hopes to keep Baby Jackson from being born too early. The doctors have said they are hoping he would be born between 34-37 weeks gestation since babies are typically born premature after undergoing this surgery. Because this is such a high-risk surgery for Joni and Baby Jackson, they will have to relocate to St. Louis to be close to St. Louis Children’s Hospital. Joni’s bedrest will require her to need someone to be with her at all times while she is living in St. Louis until Baby Jackson is born.
With only two short weeks of notice, Chris and Joni had to find Joni a place to live in St. Louis close to the hospital for the upcoming surgery. She packed up her things, put her school/work on hold, and left her family and friends behind. This move to St. Louis will ensure Baby Jackson will have nothing but the best surgeons, doctors and nurses caring for him at St. Louis Children’s Hospital.
The news of the diagnosis and the relocating to St. Louis has come so fast and not given the chance for Joni and Chris to prepare financially. They are now left with the expenses of two homes, travel expenses, medical expenses, and other expenses that come along with caring for a baby with special needs. All of these extra expenses cause strain on a family when Joni is unable to work and Chris has to take additional time off to be there for Joni and Baby Jackson in this time. Any extra help you are able to give this family is very much appreciated.
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