Navigating the complex medical journey of a child can be a daunting task for any parent, especially when it involves cranial surgery. Our daughter’s experience with sagittal craniosynostosis was marked by a singular challenge—an unusually large opening from her previous surgery that refused to close naturally. This journal recounts our journey through another surgery, describing not only the medical procedures but also the personal moments that defined this trying period. From the emotional turmoil of pre-surgery preparations to the triumphant recovery, this is a testament to her resilience and the unwavering support system that surrounded her throughout.

Sagittal Craniosynostosis Surgery at 6 Months Old

Her opening from the sagittal craniosynostosis surgery never closed on its own. I could see her heartbeat pulsating through the soft spot on her head, and I might be the only one who noticed it.

The doctor mentioned he had never encountered a hole of this size at her age. Typically, they are about the size of a penny and tend to close up. Hers measures approximately 8 by 2 cm, with a small bridge forming in the middle. During her last appointment, her pediatrician expressed doubts that it would close naturally. We were also concerned about minimizing pain and psychological impact by having the surgery earlier rather than later. After discussing it with her pediatrician, she advised that it was highly unlikely to close on its own and said that if it were her children, she would have any holes closed immediately.

Cranial Reconstructive Surgery (Cranioplasty) at 5 Years Old

The surgery was expected to last two hours. She had to stop all solid foods by 1:00 AM, have milk by 3:00 AM, and only water or Gatorade until 6:00 AM, after which she could not consume anything. A shower was required the night before, and no earrings were allowed. She could bring her clean bear along. She would be given Versed, either in syrup or nasal form, to help her relax. They planned to follow the previous incision to repair it.

When we arrived, she refused to wear the tiger gown provided for her, so child services brought her a Belle gown. Once she changed, she wanted to call her sister to show off her dress since she adores Belle. Before the surgery, she colored, watched TV, and played with dolls, although she cried during the sponge bath. She held my hand tightly until it was time to separate. They turned Frozen on for her while they wheeled her back, and they allowed her bear to accompany her into the operating room.

Recovery in The Hospital

We were placed in the ICU to ensure she had her own nurse and bed. She could not swim for two weeks, and we needed to apply ointment 1-2 times daily. She could shower in a couple of days. As she grows older, the area will develop a cobblestone, lumpy appearance. The hole was larger when they opened it up, and if any infection occurs, we wouldn’t know for about two weeks—it would present as pus coming from her incision.

I was overjoyed when she woke up. The nurses were surprised, stating that children her age typically wake up cranky. She enjoyed eating jello and sipping apple juice from a sippy cup while watching Disney movies. One nurse commented, “Wow, she looks so good. At this age, I usually worry because kids aged 2-5 don’t understand what’s happening, but she’s doing so well.” They remarked on her happiness, noting that patients undergoing neuro or cranio procedures often feel cranky. After a sponge bath, she received a new Elsa gown for bed. The nurse declared her the healthiest ICU patient ever, adding that if a child can sit up, they are doing well. She kept jumping out of bed to use the toilet and even started dancing a little. We made sure to stay ahead of her pain management this time, which made a significant difference. Pain relief was my first question right away.

On the first day, she jumped out of bed and exclaimed, “Let’s go home!” The following morning, she cried because she just wanted to return home. Once they said she could go home, she got dressed and refused to get back into bed—she was ready to leave!

She did run a low fever, and if it persisted, we would need to return to the hospital. On the second day, we managed her pain with Tylenol. When she looked in the mirror, picked up her hair, screamed, and cried about her “tangly hair,” she ran away. Prior to surgery I did part her hair to show where her past incision was. We did braid her hair after surgery. A neuro assistant mentioned a mother who was so afraid to wash her child’s hair that it became matted and had to be cut off. We needed to plan when to give her a bath, preparing for a long brushing session afterward. Her pediatrician advised on how long to wait before washing her hair to ensure it healed properly without causing pain at the surgical site.

Showering

When we finally gave her a shower, we used a generous amount of conditioner before brushing it out while still in the shower. This method turned out to be the most helpful and least painful, and now she insists on having her hair brushed this way. We also began braiding her hair in a crown around the surgical spot, allowing us to apply ointment without tangling her hair.

Pain Management

On the first night, she slept on her stomach to help alleviate the pain.

Our pediatrician suggested using Tylenol suppositories, which have proven to be a lifesaver for managing pain after this surgery.