Nyra’s Story

Site created on May 1, 2021

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Journal entry by Nyra Adams

Last night Kyle and I drove to Chicago as we are scheduled for a 6:30 AM  MRI, followed by an ultrasound, echo, meeting with the genetic counselor and then the entire Spina Bifida Team on March 18th 2021. It certainly was a long day  but both Kyle and I felt a sense of calmness as we felt at peace with our decision in learning more about fetal surgery and weather or not we were candidates for the procedure. 

 

After a long day of testing and meeting with our nurse coordinator and social worker we were able to meet with the team at 5:30 PM later that afternoon. Our nurse coordinator walked with us to the conference room where a plethora of surgeons and doctors awaited to meet us. It was quiet the experience as everyone went around the room to introduce themselves. To be honest I can't remember every single neurosurgeon that was there that day as diagnosis day was extremely overwhelming but it reassured Kyle and I that we were working with one of the best multidisciplinary teams in the country.

Dr. Aimen Shaaban then directed the meeting and  indicated that through the numerous tests it was confirmed that Baby Girl Adams was diagnosed with Spina Bifida.  Dr. Shaaban indicated that every diagnosis for spina bifida is different for each child and that there really is no cure for Spina Bifida but rather its a disease  that needs to be  managed throughout the child's life into adulthood.  Dr. Robin Bowman who is Lurie's pediatric neurosurgeon spoke about Baby Girl Adam's hydrocephalus,  ( fluid in the brain),Chiari II malformation (in which the brain tissue extends into the spinal canal), Myelomeningocele,( MMC for short, is a birth defect in which the bones, skin and soft tissue that protect the spinal cord do not form properly, leaving an opening in the baby’s back), possible bowl and bladder malfunctions, and clubbed feet.  Dr. Bowman shared that based on the the imaging that Baby Girl Adam's lesion was a good size, and the opening was from L1 down to the sacral. Further, it was shared that with a postnatal repair Baby Girl Adam's would most likely need to be in a wheel chair as her opening affects her mobility from her waist down. Dr. Bowman also indicated that needing a shunt to move fluid from the brain may be a possibility along with other complications. Bowl and bladder functioning would be determined at the time of birth and sometimes catherization would needed in some children. The clubbed feet could also be corrected with casting and surgeries.  As hard as this day was, meeting with the Lurie's team felt like a miracle. Despite the news we received the team made us feel so comfortable in any decision that we would make going further. But knowing that we had a multidisciplinary team who would be working so closely with us and monitoring our child's grow within utero and beyond was such an amazing feeling to have. 

Within the following two weeks, Kyle and I completed phase II and phase III with the Lurie's team. At these meetings we discussed the potential for open and fetoscopic surgery along with potential risks and benefits that they surgery would put on myself and our baby girl.   Kyle and I had learned that Lurie's has completed over 100 successful open surgeries and Baby Girl and I would be the 4th fetoscopic mom and fetus to undergo fetoscopic surgery. To go further into detail about the types of surgury; open surgery was a larger incision on the uterus to expose Baby Girl's spine for repair. Fetoscopic would be three small incisions approximately 1/8 cm on the uterus and scopes would be inserted to repair the spine! (Crazy I know). It was scary yet amazing to think about how the world of Medicine could perform such a miraculous procedure. Fetoscopic surgery would potentially give me the option of having a vaginal birth rather than a C-Section and the team was hopeful as it is a little less invasive in terms of recovery. The potential benefits of in-utero surgery based on the MOM's study (which have all been open surgeries) have shown that it has prolonged the need for a shunt and has benefitted some children in their mobility along with reversing the Chiari II. Just learning the potential benefits this could provide our Baby Girl gave us hope.  It was determined and confirmed by the team that Baby Girl and I were perfect candidates for the operation.  At our phase III meeting we signed documents to proceed with fetoscopic surgery scheduled for April 12th at 8:00 AM. We were informed that if there were any barriers to performing this operation fetoscopically that the team then would revert to performing an open operation. 

 

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