Sarah was born in July 2012, healthy, perfect, and loved by her two big sisters. We commented on her tall forehead but thought nothing odd of it. At her 6 week check up, the doctor could not feel her soft spot and said her head measured small.
“It’s probably nothing,” she said, “but I am writing you a referral just in case.”
And so the worry began. We were first sent to a pediatric specialist before being sent on to a neurosurgeon. At 12 weeks old Sarah was officially diagnosed with Bi-coronal craniosynostosis. I recall it taking me weeks to even properly pronounce this new addition to my vocabulary.
Over the following months Sarah visited her neurosurgeon, plastic surgeon, ophthalmologist, geneticist, and had her first CT scan. During these many visits, I learned the importance of trusting my instincts and that I truly was my child’s best advocate. Our neurosurgeon laid out a surgery plan including a 3 step process of inserting springs, spring removal, and a frontal orbital advancement. The plastic surgeon seemed to think the springs unnecessary as did another doctor via a 2nd opinion. In Sarah’s case the back of her head was fairly well rounded with the brachycephaly appearance largely effecting the front of her head. We returned to the neurosurgeon who agreed to perform a Frontal Orbital Remodeling on Sarah when she reached 11 months old.
The waiting proved excruciating and to this day far more difficult than the surgery itself. The morning of the surgery arrived and we were shown to the hospital room where we would spend the next 4 days. I carried Sarah to the operating room where the surgeons were prepared to begin. I held the oxygen mask to my 11 month old baby’s face as the anesthesia flowed. Then I trudged back to the hospital room, my arms empty.
4 1/2 long hours later, the nurse knocked on the door. Sarah was in recovery, awake, and hungry! I was able to hold and breast feed her right away. It was then I knew my baby would be okay. The first 24 hours were spent in the PICU amidst the beeping machines and hustle of busy nurses. The next day Sarah joined us in our private hospital room. Mere hours later her head drain was removed. This was a huge step in the recovery process. It felt wonderful to pick up my baby and carry her around the room without tangling us in tubes and wires.
Day 2 the swelling worsened as expected. Her appetite was minimal but she continued to breast feed regularly, as much for comfort as for food. Day 3 the swelling continued but it did not phase Sarah in the least. She was already returning to normal and enjoyed a visit from her big sisters and grandparents. On our 4th day in the hospital, our surgeons examined Sarah and agreed she was ready to go home.
Despite it taking time to return to a normal eating and sleeping pattern, it was good to be home. 3 weeks after the surgery, Sarah celebrated her 1st birthday. Her recovery was seamless. By 3 months post-op, her hair covered her scar and nobody could believe she had undergone major surgery. Sarah continued to grow and develop well proving just how resilient she is.
All of her follow-up appointments have gone smoothly with no signs of needing any further surgeries. Today Sarah is a healthy and very active 3 1/2 year old. She loves preschool, tumbling, and generally being on the go.