Kacie's story
I remember when I saw Kacie for the first time thinking that she had such a nice round head. I was surprised seeing as how she was born vaginally. She was healthy and flawless. We had a prefect little baby girl.
By the time Kacie was 3 months old we noticed her head taking what we called "a peanut shape". Her nickname actually became "Princess Peanut Head". At our 6 month doctor's appointment the doctor commented that Kacie had a "funny" shaped head and off we were. I left feeling a bit confused on how to feel about the comment but the doctor didn’t show any concern so I figured there was nothing to worry about.
It was at our 9-month appointment that the doctor decided we needed to look into the problem. At that time Kacie’s head was in the 97th percentile. The doctor was concerned that Kacie had water surrounding her brain that would require surgery. (This is not good news to receive on your birthday). We were sent to see a paediatrician in Winnipeg who by taking one look at Kacie figured she had craniosynostosis. We were immediately sent for x-rays and referred to a plastic surgeon.
I had visions of myself being one of those parents you see on Life's Little Miracles. But at the same time thought that this couldn’t be happening to us.
When we met with Dr. Ross (the plastic surgeon) he gave us lots of information to process. The CT scan proved that Kacie had sagittal fusion. She was diagnosed at a later age than ideal but everyone reassured us that it was not too late. The surgery was now going to have to be done differently then if it would have been done earlier. By the time the surgery date would come around she would be 13 months old. We were told that there would not likely be developmental problems. Ultimately the decision was completely up to us. We were told of all the pros and cons. For some reason the cons really stood out in my mind.
Our first reaction was that we had no choice. There was only one thing to do for Kacie and that was to have the surgery. At times that was hard to stand by and I would catch myself having doubts. Thankfully we got to talk to other parents who had children that went through the same thing we were going through. One of the mother’s had created a web site of her son’s surgery and recovery. The stories were very encouraging.
The surgery date was set and I was surprisingly calm about the whole situation. (I surprised myself because I am generally the extreme worrier) I believe all the prayers and support we received kept me strong.
Thankfully Kacie was young enough that she wouldn’t remember any of the bad stuff.
We arrived at the hospital May 24th 2005 at 6:30am to check in. Kacie was examined to make sure she was in good health. She was and word came back that there was a bed available so the surgery was a go. The neurosurgeon however had been called in for an emergency surgery so we had a bit of a wait.
I remember Kacie being so good that morning. I started feeling guilty that soon she would be going through major surgery because of a decision we had made.
The time came to hand Kacie over to the nurse and away they went to prepare her for the surgery. We were given updates periodically throughout the day. Everything was going well with no complications. The whole surgery took approximately 8 hours.
When we finally got to see Kacie for the first time, I was prepared for what I was about to see but seeing my little girl like that was one of the hardest things I’ve had to do. She didn’t look like my Kacie.
The doctors came to talk to us about how everything had gone. Kacie had done excellent. She did however lose enough blood to receive a transfusion. (Which we were told to expect)
Tuesday-2 hours after surgery
Kacie had been given morphine before leaving the OR. She was sleeping when we saw her. There was lots of swelling.
5 hours after surgery
When she woke up she started vomiting due to the narcotics. She was wake for only moments at a time.
Wednesday-morning after surgery
She had only received Tylenol for the pain through out the night. At times we wondered if that was enough for her. Blood from the drainage tube in her head was seeping through the bandage so they keep an eye on how much was spreading by drawing a line around the blood spot.
She was moved from ICU to the medical ward at afternoon.
24 hours after surgery
Kacie was still losing quite a bit of blood. They kept monitoring the amount that was being collected in the pump. When she was wake she was alert but relaxed. She was fine with lying around having us hold her hand.
Thursday
We notice she was getting a skin rash by her mouth and on her back/shoulder. We applied Bactroban ointment. The doctors were not sure what was causing it but it didn’t seem to be anything serious.
We finally got to start holding her!!!
The head dressing came off sometime in the afternoon. When I got to see her head for the first time without the big bandages I could notice a HUGE difference in the shape. There was still a lot of swelling.
By the evening we couldn’t keep her down. She was getting her energy back. It seemed like every hour she improved by leaps and bounds.
Friday
We were up early playing with toys and waited to hear if we would be going home.
By 2:00pm we were packed up and on our way out!
When we got home Kacie was in good spirits. She was excided to play with her own toys again.
Her nights were disrupted…she woke up pretty much once an hour. We had been given a mattress wedge and sling that she had to be strapped into for sleeping to keep the swelling down. It took about 2 weeks before we got any good sleep.
At our follow-up appointment the doctors were very happy with how Kacie was doing and looking. We decided she would benefit from wearing a helmet. We had a STARscan, which was used to order a helmet made for her head.
It took about a month for the helmet to come in. When it arrived it was very much to big. After many alterations Kacie accepted the helmet surprisingly well. She ended up wearing the helmet for a total of 4 months. It made a lot of improvement to the shape of her head. We achieved what we were hoping to. Kacie now has as close to a "normal" shaped head as possible.
Kacie is now 2 years old and one year post op. She is a brilliant little girl with great character. We actually joke that they must have installed extra attitude during the surgery. So far Kacie’s development has been right on track.
We are very thankful to the surgeons and their team for everything they have done for us.
Before pictures
Pictures of the incision
Pictures of Kacie with the helmet
After pictures
