Thank you for visiting Maeve’s Caring Bridge website. Matt and I figured this would be the easiest and best way to update everyone along this journey. Please read below for her story and we promise to update you through journal entries as we get more information. As of now, we just ask for all of your constant prayers and support as we are trying to navigate through this unbearable time.
July 20th, what started as a normal day with our brand new 8 day old baby girl quickly turned into the worst day of our lives. Maeve woke up that morning a little more congested than normal. We decided to bring her to the pediatrician office as it sounded like the congestion was in her chest at this point. While there, we had our pediatrician take a look at her hips and legs again. Since her c-section on the 12th, Maeve had trouble moving both her hips and lower legs. The doctors contributed it to her being breach for so long and said it would take time and she would eventually move them on her own. Well as the days progressed, she started slowly moving her right hip and leg but still hated when you touched her left.
Doctor order us to get an X-ray of her left leg. X-rays in Bloomington, IL showed a large fracture of both her tibia and fibula and we were quickly transferred to the emergency department at Childrens Hospital of Illinois in Peoria.
After an extensive and exhaustive amount of testing, DCS involvement, and additional imaging the unimaginable happened. We were told this was a pathological fracture, meaning there was a mass between the bones causing them to break. We were quickly transferred to inpatient unit in Peoria, IL where we were there for about a week. Tests after tests and scans after scans, the doctors in Peoria transferred us to St. Jude in Memphis, TN.
Throughout our MANY trips back and forth to St. Jude in Memphis, multiple bone biopsies, extensive lab work, a variety of tests and studies, we still had no real answers. The doctors diagnosed her tumor initially as a fibrocartilagenous mesynchyoma. She is the only one in her age group to have ever been diagnosed with this tumor and the 27th case in the world. While trying to get these fractures in her legs to heal, she has been in a variety of different casts and braces.
One of the casts they put her in was called a hip spica, which required a different type of operating room setting that St. Judes could provide so the referred us to another orthopedic specialist at Le Bohner’s Children’s Hospital in Memphis, TN. While Maeve was under anesthesia for this procedure, the orthopedic asked us if she had ever been diagnosed with a genetic condition called pseudoarthrosis of the tibia. After long discussions with her oncology and orthopedic teams, we decided to go through even more testing and procedures. Another bone biopsy did confirm that Maeve does indeed have this condition called pseudoarthrosis of the tibia. In laymen’s terms, it means that her bones have very little to no chance of ever healing once fractured.
As of our recent trip to Memphis and long discussions of all of our options, we came to a rather hard decision. We decided due to the extent of Maeve’s fractures and her tumor, it is best if we move forward with a lower leg amputation. We are waiting until July when Maeve is about a year old in order for her to be properly fitted for a prosthesis.
In the meantime, we will continue to meet with St. Judes every 3 months for MRIs and testing. We are also in the process of meeting with genetics to see if Maeve has another condition called neurofibromatosis type 1 (NF1).
We ask for continued prayers and support during this difficult time. We will continue to update everyone throughout this journey. For more details please continue to read the journal entities. So many people have reached out and asked how they can help and the best way right now is for prayers and donations to our Go Fund Me (linked below). Thank you all again,
Matt, Nichole, & Maeve Rave
Go Fund Me:
https://gofund.me/669a3ef3 
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