Sienna’s Cranio journey. Hi my name is christy and my daugther Sienna Addison was born on July 2, 2012. Right away I knew something was wrong with her head/eye, but no one would listen to me. Everyone but me thought she looked fine and that her face being distorted a little was normal. She was stuck coming in my pelvic area for a little bit and my mid-wife did say her nose was getting smashed and to push hard…so I thought maybe it was that and gave it some time to fix itself. Well at her 2 month check up it still hadnt fixed itself and I was worried so I asked her pedi about it. He wouldnt even look at her head/eye and told me “thats just how her head is”! I left feeling very upset and not satisfied at all with his answer, and how he didnt even come over and examin her! I called the office the next day and told them that I wanted to see another doctor in the practice or I was taking my daugther somewhere else for a second opinion….they got me in the next day.
Once I met with her now peditrician and voiced my concerns about her head, eye, and why I thought it was a form of craniosynostosis…..she felt her head, examined her closely, and sent us for x-rays that day! The x-rays came back within 30 min. stating that there was something wrong and that her skull/eye’s didnt match on both sides. I talked to her Pedi after that and we set up an appointment to meet with her amazing plastics doctor, Dr. Pershing!! He confirmed just looking at her and feeling her head/face that she did infact have Right Coronal Craniosynostosis. He had us go for a CT to be 100% sure and it came back 100% that he was right, I was right and that she would need surgery for this! Hardest day of my life getting that confirmed but also the happiest because I knew something was wrong, I pushed the issue when no one would listen, and I got her properly diagnoised early, right as she was turning 3 months.
Early diagnosis is the key!! So once it was confirmed we then met with her amazing Neuro doctor, Dr. Ducan. Dr. Persing and Dr. Duncan have been doing craniosynostosis surgeries together for 15+ years so I was so greatful to have found them. Also, Dr. Persing isnt only a plastic’s doctor, he’s also a Neuro doctor/surgeon as well!! They are the most amazing team of doctors I’ve ever met.
After meeting up with them we set the surgery date for Dec. 6, 2012, the wait began. Durning that time we also met with the optomoligist and the genetics specialist to rule out any other possiblities. Thank goodness her eyes are great, so no surgery was needed on her eyes. After meeting with the genetics specialist to see if it was an isolated event or if there was more, that came back with great knews as well…it was an isolated event…Joy was all we felt!
Finally it was surgery day, the hardest day of my life…handing my baby over to the amazing team of doctors at Yale New Haven Hospital in CT. While they are amazing and I trusted them completely, that was still very hard to do!! Doctor Persing did send his personal nurse practicianer out every hour on the hour to update us, and if I wanted more updates all I had to do was the tell lady at the desk and she would go in and tell them I wanted an update…they would then send her out right then….
Amazing! Dr. Persing also cuts from around the back of the skull, ear to ear, in a straight line…..instead of on the top of the skull like most, in a zig-zag cut. He told me that he’s done it all ways and this way has proven to have the least scaring and heal the best! He’s so right too because her hair isnt long and when you look at her skull in the back you cant even tell she was ever cut on her head, or had surgery! Very happy with that!! The surgery went great, only 4 hours total with prep and everything!! Sienna my trooper, fighter, so strong! As soon as they took her up to the PICU we were able to go in! We didnt have to wait, we were the first people she saw and heard when she woke up, it was amazing! The swelling really kicked in on the 2nd day, but she was so strong and did great with the pain! She is truly my Cranio warrior…these kids/she’s amazing! She only needed Tylenol after the 2nd day and before that just Tylenol and Oxycodone.
When she went home Monday she was off all pain meds. She didnt need a blood transfusion either, yah!! They were so great at Yale, I stayed with her the whole 4 days we were there! We went in on Thursday for the sugery and got to go home on Monday! The day we left was the first day she opened one eye and looked at me, that was the best feeling in the world!! Now Sienna is doing her 6-8 week helmet therepy and she looks great!! She’s doing amazing with the helmet, and we decorated it with football and princess decals, with her name on it as well!! We cant wait until she’s all finished with the helmet and living a normal life as a healthy baby girl!! We love our special little Cranio Princess!!