Medical Support for CJ Farrar

My name is Pam Shackelford and about 3 months ago our family began an unexpected emotional adventure when my sister, Valerie, and her husband, Casey, learned that their unborn baby, C.J., had a skull abnormality. The expected excitement of finding out if they were having a boy or another girl was overshadowed by the unknown as the doctor shared that an abnormality was found on the skull during an anatomy scan. This discovery began a flurry of doctor visits: weekly perinatal; fetal MRI at Egleston’s Children’s Hospital; pediatric plastic surgeon; and pediatric neurosurgeon. Through these visits they learned that this is most likely a very rare genetic condition called Craniosynostosis. The rareness of C.J. ’s syndrome required the transfer to an OB practice at Northside Hospital to be closer to Scottish Rite Children’s Hospital. As far as the doctors could tell from the MRI and ultrasounds, all 5 sutures in C.J.’s skull have fused together causing his skull to form in a “clover like” shape; also referred to as “Clover-leaf syndrome”. 

 C.J. was born on July 9th and  he is 19” long and was 8lbs 4oz . He does have craniosynostosis (cloverleaf syndrome) and all 5 of the skull sutures were fused together instead of being open/flexible. The myriad of doctors believe he has pfeiffer syndrome but won’t know if it is type 1,2 or 3 until genetic tests come back; they think type 2. Because his head is clover shaped, it is putting pressure on his nose and eyes so he is on a breathing and feeding tube and they had to surgically sew his eyes closed as a temporary solution to protect them. He will have surgery on Friday July 13th to remove part of his skull to help relieve the pressure on his brain and head. This will start the reshaping process. He will require surgery again roughly around 3, 6 and 9 months; then again when he has growth spurts up until he is about 10. 

He is very responsive to people; recognizes voices and has long musician fingers with a strong grip. He hasn’t decided if he wants to play guitar or piano; I told him that he could think about it for a few days.

Val and Casey are doing well. She was released from Northside today and went straight over to CHOA to be with CJ. The expected recovery time from tomorrow’s surgery is 7-10 days but he can’t go home until he can breathe and eat on his own. 

Valerie and Casey are incredible people with generous hearts and loving, compassionate characters. They are wonderful parents to their 3-year-old daughter, Savannah, and are so excited to welcome their new baby, C.J. home. During this emotion filled journey, they have never let potential fears override their joy for the blessing of a new baby. Both are dedicated teachers: Valerie has taught Kindergarten and First- grade for 14 years and Casey had an early mid-life crisis in which he went back to college to get his degree so he can teach History to Middle and High schoolers!  They are amazing, kind and genuine people facing a very unknown future.  C.J and his family will face many physical, emotional and financial challenges in the coming years. C.J.’s treatments, surgeries and specialized medical equipment won’t come cheap. We all know that teachers are invaluable to the future of our children however, they remain a seriously underpaid profession. I know that any support you can share would be greatly appreciated by Valerie and Casey and they thank everyone in advance for their support, prayers and best wishes.

“Despite this bump in our family’s road of joy, we are holding onto our faith in God that He has a plan for our baby boy (and family) and that He will continue to give us peace and patience during this time.  Please lift our family up in positive thoughts and prayers as we walk this journey.” – Casey & Valerie Farrar

 
Please pray for them all.  We, C.J.'s Angels,  will keep updating the post so every one knows the latest. 

I have added a link on “Clover-leaf & Pfeiffer Syndrome” if anyone is interested in reading more about it:

https://rarediseases.info.nih.gov/diseases/3115/kleeblattschaedel-syndrome
https://rarediseases.info.nih.gov/diseases/7380/pfeiffer-syndrome