What is Craniosynostosis?

Craniosynostosis is a condition where the sutures in an infant’s skull close prematurely, impacting the shape of the baby’s head and potentially affecting brain development. Early diagnosis and surgical intervention are crucial to preventing complications like increased intracranial pressure, developmental delays, and vision problems. For parents, discovering and addressing this condition can be an emotional journey filled with anxiety, hope, and the desire for the best possible outcome for their child. This personal story explores the emotional and medical challenges faced by a family as they navigate the diagnosis and treatment of sagittal craniosynostosis in their young daughter.

Pediatrician Appointment

When my daughter was around five months old, I asked her pediatrician about her head shape because I had a nagging feeling something was off. I had seen a celebrity post about her son wearing a helmet, which prompted me to inquire. I thought she might need a helmet, or maybe not, but I needed to get my concerns addressed. I noticed her twin’s head shape differed from hers.

The pediatrician recommended that we consult a neurosurgeon but reassured us not to worry or rush. After reaching out to the neurosurgeon, we explained the situation, and they reviewed her notes, scheduling us an appointment with a neurosurgeon the very next day during his lunch break.

Neurosurgeon Appointment

The neurosurgeon informed us that her skull had fused too early, causing her brain to grow out of her forehead and the back of her head. Surgery was necessary to open her skull due to potential risks, including blindness and death. Upon receiving the diagnosis, she immediately began to cry, as if she sensed what was happening. She became distressed whenever someone mentioned it. The doctor emphasized the importance of performing the surgery as soon as possible, stating that the earlier it was done, the better.

Surgery

A few weeks later, she underwent surgery. Since my husband, mother, and father all shared her blood type, they kindly donated blood in case she required a transfusion. I was a match, but unfortunately, I was too anemic to donate. We contacted the hospital where she was born to confirm her blood type, and everyone had to check if they matched.

Day of Surgery

She had to fast from food beforehand. The surgery was scheduled for 10:30 AM, and we arrived at 7:00 AM. Although she had a fever the week prior and a stuffy nose on the day of surgery, the procedure was too critical to postpone. Upon arriving at the hospital, she was surprisingly happy and calm, which amazed everyone, especially considering she was hungry. She even watched the TV screen.

After the surgery, the doctor came out to inform us that everything went smoothly. She lost only a teaspoon of blood and would be drowsy from the anesthesia for about six hours. The back section of her skull was completely fused, while the top was partially fused, which complicated the procedure slightly. A follow-up appointment was scheduled for a month later to assess her head shape.

First Day of Recovery

When we saw her in recovery, she was either moaning, crying, or sleeping. The morphine made her scratch her face, leaving it red and irritated. She clung to everything—my fingers, her doll, and the crib. She was hardly awake except to cry and moan in pain while sleeping. The nurse advised us to try to give her Pedialyte, but she refused and cried in pain. I eventually realized she was not on around the clock pain medication. I insisted on more medication because they didn’t have her on around-the-clock pain relief. I thought the nurses were managing the pain meds, but in this case it was not. The Tylenol with codeine seemed to make her scratch more, potentially due to the morphine wearing off after only 30 minutes.

Holding a small doll or my finger seemed to comfort her. They adjusted her bed to an incline, which helped, and they provided a light music toy that she enjoyed. She received a blood transfusion since her hemoglobin dropped from 10 to 8. Normally, they administer transfusions when levels reach 7, but the doctor decided to proceed under 10, especially since her heart rate was elevated. It took a couple of hours and was done in her room. She also needed a catheter overnight because she wasn’t urinating, leading to a distended bladder, but after that, there was pee in the bag. For the first day, we focused on staying ahead of her pain.

She slept throughout the day and night, occasionally crying out. The night nurse was wonderful, keeping her on Tylenol around the clock, raising her bed, and providing her with a pillow, which she seemed to appreciate. The side of her face she rested on became puffy from the fluid. She started to respond better to the Tylenol instead of morphine, allowing her to manage her pain more effectively. The nurse continued to elevate her bed and provided the pillow she liked.

Second Day of Recovery

She woke up and consumed 6 oz. of liquid. They removed her catheter and stopped the IV fluids. She was on Tylenol instead of morphine and was doing better. Today, she finally smiled and opened her eyes, though she was still scratching her face. She ate regularly throughout the day and was relieved to be free from the IV.

Later in the day, her face began to swell. Her hemoglobin level was 10.7; she had lost 140cc of blood the day before and only 30cc the night before from the surgery site. Morphine was no longer given because it made her scratch her face excessively. We continued with Tylenol.

At times, her temperature spiked, causing her to feel hot, so we dressed her in a light sleep sack and blanket for regulation. She continued to scratch and developed a splotchy rash in some areas. After one feeding, she vomited a little.

Third Day of Recovery

She slept through the night, except when the antibiotics were administered at 2 AM, followed by a dose of Tylenol. She was on Tylenol suppositories, which seemed to be sufficient for her pain. There were glimpses of her smiling again—though not her usual exuberant smiles, just small ones. The doctor came in to remove the blood drain from her head and take off the large bandage, which caused her discomfort and upset her for the rest of the day. She became reluctant to be put down and experienced significant pain. We had to switch to ibuprofen because Tylenol was no longer effective. She cried continuously, indicating severe pain, and only ibuprofen provided relief.

She struggled a lot after the tube was removed from her head and the bandage was taken off. It was difficult for her to sleep, and she cried unless held and rocked.

A month later, she was fitted for a helmet. Although she disliked wearing it, I believe it helped alleviate some of the pain following her surgery.