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Hello Everyone!
If you could please take a moment and read the information below it would mean so much to me. My brother, Bill, and his wife, Allasondra, are the parents of an amazing one year old son and were so excited when they found out they would be having their second child just this past spring. In preparation for a gender reveal party, Bill and Allasondra went in for their routine growth/gender scan, however they came away with the knowledge that more testing would need to be done as their baby girl (as revealed during the scan) had what looked like a cyst on her spine often indicitive of Spinda Bifida. They were told further testing would need to be done and referred to a specialist. About a week later they recieved a 4D ultrasound which confirmed baby Eveyln did indeed have Spinda Bifida but they were unsure of the severity. The follow information is from my brother and Allasondra and it details exactly what they found out about Evelyn and what her future would hold:
During or anatomy ultrasound a cystic mass was found at the base of Evelyn's spine. The news naturally shocked as us as it would any parent and after a week of waiting for answers we were seen by Geisinger Maternal Fetal Medicine in Forty Fort and were informed after an in-depth ultrasound that Evie has spina bifida myelomeningocele.
In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back.
During development the opening in the spine causes the cerebellum to drop down into the spinal canal pinching off the 4th ventricle in the brain. (The drainage point for cerebral spinal fluid) causing fluid to build up. Also due to the spinal cord being exposed to the womb the spinal cord and nerves are damaged critically injuring or weakening certain body functions.
On July 7th Allasondra was seen by The Children's Hospital of Philadelphia's Special Delivery Unit. After an in-depth two hour long ultrasound, fetal MRI and fetal echo-cardiogram they found Evie's lesion to be between L-4 and S-4. At this location she will have weakness from around her knees down that will require braces and physical therapy to assist her learning to walk. She will also be bladder and bowel incontinent. The main concern now is the hind brain herniation and closing of the fourth ventricle which will require a shunt being placed after she is born.
As of today our game-plan is to deliver her via c- section during the 37th or 38 week in Philadelphia. Within 24 hours after birth she will have surgery to close the opening in her back and protect her spinal cord. Within 48 hours after that surgery she will have another surgery to place the shunt.
The past month has been the longest month of our lives and we truly appreciate the support from friends and family who are already aware. We felt it was finally time to inform everyone else and thank everyone for their support. Allasondra likes #eviestrong for her posts about her and we are ready to meet this challenge head on! We will keep everyone posted from here on out. We'll be returning to CHOP next Friday for another appointment and will have more info then.
Bill and Allasondra did have a follow up visit this past week for Evelyn and they are now preparing their lives for a move down to Philadelphia, as Allasondra and Evie need to be close to the hospital for two weeks prior to the scheduled C-Section date. Following her birth, Evie will require a surgery within 24 hours to close to hole in a her spine and then another surgery after that for possible shunts due to the excess fluid that often surrounds the brain for babies with Spinda Bifida. They have a long road ahead of them with physical therapies, medical equipment, learning how to help Evie with her lack of bowel and bladder control, along with potential risks that come with the surgies and the potential for more surgeries as she grows. Bill and Allasondra will also need to remain at CHOP for 6 weeks or more after her birth to maintain her care and monitoring after her surgeries. Any help that can be donated for Bill, Allasondra, Little Billy, and Evie would be so greatly appreciated. They will be uprooting their lives and starting this journey with Evie while also maintaining some type of normalcy for their son. Words cannot express the love we feel for them and the hope we have for an incredible future for this sweet baby girl. #EvieStrong
If you could please take a moment and read the information below it would mean so much to me. My brother, Bill, and his wife, Allasondra, are the parents of an amazing one year old son and were so excited when they found out they would be having their second child just this past spring. In preparation for a gender reveal party, Bill and Allasondra went in for their routine growth/gender scan, however they came away with the knowledge that more testing would need to be done as their baby girl (as revealed during the scan) had what looked like a cyst on her spine often indicitive of Spinda Bifida. They were told further testing would need to be done and referred to a specialist. About a week later they recieved a 4D ultrasound which confirmed baby Eveyln did indeed have Spinda Bifida but they were unsure of the severity. The follow information is from my brother and Allasondra and it details exactly what they found out about Evelyn and what her future would hold:
During or anatomy ultrasound a cystic mass was found at the base of Evelyn's spine. The news naturally shocked as us as it would any parent and after a week of waiting for answers we were seen by Geisinger Maternal Fetal Medicine in Forty Fort and were informed after an in-depth ultrasound that Evie has spina bifida myelomeningocele.
In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back.
During development the opening in the spine causes the cerebellum to drop down into the spinal canal pinching off the 4th ventricle in the brain. (The drainage point for cerebral spinal fluid) causing fluid to build up. Also due to the spinal cord being exposed to the womb the spinal cord and nerves are damaged critically injuring or weakening certain body functions.
On July 7th Allasondra was seen by The Children's Hospital of Philadelphia's Special Delivery Unit. After an in-depth two hour long ultrasound, fetal MRI and fetal echo-cardiogram they found Evie's lesion to be between L-4 and S-4. At this location she will have weakness from around her knees down that will require braces and physical therapy to assist her learning to walk. She will also be bladder and bowel incontinent. The main concern now is the hind brain herniation and closing of the fourth ventricle which will require a shunt being placed after she is born.
As of today our game-plan is to deliver her via c- section during the 37th or 38 week in Philadelphia. Within 24 hours after birth she will have surgery to close the opening in her back and protect her spinal cord. Within 48 hours after that surgery she will have another surgery to place the shunt.
The past month has been the longest month of our lives and we truly appreciate the support from friends and family who are already aware. We felt it was finally time to inform everyone else and thank everyone for their support. Allasondra likes #eviestrong for her posts about her and we are ready to meet this challenge head on! We will keep everyone posted from here on out. We'll be returning to CHOP next Friday for another appointment and will have more info then.
Bill and Allasondra did have a follow up visit this past week for Evelyn and they are now preparing their lives for a move down to Philadelphia, as Allasondra and Evie need to be close to the hospital for two weeks prior to the scheduled C-Section date. Following her birth, Evie will require a surgery within 24 hours to close to hole in a her spine and then another surgery after that for possible shunts due to the excess fluid that often surrounds the brain for babies with Spinda Bifida. They have a long road ahead of them with physical therapies, medical equipment, learning how to help Evie with her lack of bowel and bladder control, along with potential risks that come with the surgies and the potential for more surgeries as she grows. Bill and Allasondra will also need to remain at CHOP for 6 weeks or more after her birth to maintain her care and monitoring after her surgeries. Any help that can be donated for Bill, Allasondra, Little Billy, and Evie would be so greatly appreciated. They will be uprooting their lives and starting this journey with Evie while also maintaining some type of normalcy for their son. Words cannot express the love we feel for them and the hope we have for an incredible future for this sweet baby girl. #EvieStrong
Organizer and beneficiary
William Dixon
Beneficiary