Gage was diagnosed when he was two and a half months old (May 2006) and his first surgery at 6 months and two weeks. He did very good during his surgery and only needing two blood transfusions and one plasma transfusion. Although he had swelling (both eyes were swollen shut for three day) he didn’t have hardly any bruising. He left the surgical room with five plates and 34 screws holding his skull bones in place. He recovered well and we went back to the doctor once a year for follow-ups. At the age of 4 Gage began having frequent headaches, and at times migraines; however, it was not believed that this was due to the craniosynostosis. During his 5 year check-up (September 2011) the doctor stated that things were still looking good but he still wasn’t ready to release him. We were told to keep an eye on behavior, changes in vision, etc.
My husband and I had been in regular contact with Gage’s school, teacher, nurse, etc. They called us in December 2011 with concerns regarding his speech as he had began stuttering and it was getting worse quickly. We contacted the doctor and they had us come in at the end of January for a CT and follow-up. The CT showed what appeared to be some pressure but they weren’t for sure. A spinal tap was ordered for February 14th; we were told that they wanted his pressure measured during the tap at 15 but that they would need to operate on anything over 25. Gage’s pressure was measured at 30; they removed 8ml of spinal fluid at that time. When we got home with Gage and were awaiting a call from the doctor to see when the surgery would be, Gage said “Mom, my head doesn’t hurt anymore”. I said “Gage, I didn’t know that your head was hurting today”. Gage responded with “Mom, my head always hurts but I only tell you guys when it hurts really bad”. My heart sank…my poor baby had been in pain everyday and I didn’t know it. My husband and I both thought that we must be bad parents but then we realized that he acted the same and never gave any indication that he had the headaches all the time…there was no way for us to know. The removal of the fluid had literally taken the pressure away causing the headache; however, the headaches would return in just days.
We got home from the spinal tap about 12:30pm and got a call from the doctor’s office confirming the results. They called back 30 minutes later stating that Gage’s craniosynostosis was so severe at this point in time that they needed to do the surgery in three weeks; they actually had to reschedule another child’s surgery in order to get Gage in for fear of permanent brain damage. My husband and I were devastated. The positive was that the surgery would occur soon and we wouldn’t have to wait for months; however, the fact that the surgery needed to take place so quickly was scary. Surgery for Gage at such a young age was difficult however we took comfort in knowing that he would never remember the pain that he was in or the stares that he received while we were out in public during his recovery. Surgery this time would mean a longer surgery and a more difficult recovery; however, the worst part was knowing that he would be aware of everything that would be happening and would remember it.
We shaved Gage’s head a week prior to the surgery so that he and his classmates could get used to seeing him without hair. Our neighbors came to Gage’s side and allowed for him to shave the heads of five men and three teenagers so that Gage wouldn’t be alone. Gage and my husband also had a head shaving party…all of this helped ease Gage into the fact that his looks were going to change for a period of time. The school also had us go to school with Gage one day and explain to his Kindergarten classmates that Gage was going to have surgery because “he is so smart and has such a big brain that they have to make more room for it”. We explained that none of them would need to have this surgery done and that Gage was going to be ok but that he would be gone from school for a few weeks and that when he returned he would wear a helmet and would need all of his classmates/friends to be supportive and make sure that they are protecting him and his head by not touching him, but that they also need to protect his heart. Letters were sent home to parents, with our permission, so that they could help support their child regarding questions they might have about Gage.
March 12th came – surgery day. The surgery lasted six hours and then he had another three hours in recovery. He had four blood transfusions and two plasma transfusions. He was taken to ICU, which is normal, and this time left the surgical room with 14 plates and about 70 screws in his skull. He was in the hospital for a total of five days and lost about six pounds…this was a large amount to lose as he is 6 years old and went in only weighing 38 pounds. His left eye was already swollen shut when we saw him for the first time and his
right eye was swollen by the first night. His left eye would stay swollen shut for nine days but he wasn’t able to open it enough to really see for about 12 days. The right eye was swollen shut for six days and he was able to see out of it fairly well after a total of eight days.
Although it has been a little bit more than a month since his surgery his eyes are still somewhat discolored and swollen. He had double vision until 35 days after the surgery and then suddenly, while we were buying groceries, did his eyes go back to seeing normal. His personality has returned as he was pretty grumpy for a few weeks after the surgery…who could blame him though. He was gone from school for two and a half weeks but has returned. The students not only in his class but the whole school welcomed him back with huge arms. The biggest thing at this point is telling him to “slow down” as he is back to running and climbing, which we tell him not to do. =) Also due to Gage being “blind” due to the swelling for over a week, and double vision for over a month, that it was very scary for him. A tip for families who are having a second, or initial surgery, done when the child is older, is to have plenty of tank-top undershirts. Clothing for Gage when he was a baby was easy as we could find tons of things that buttoned up. A six year old who lives in t-shirts though has a difficult time adjusting to button up shirts, most of which have a collar. We ended up purchasing a ton of large scoop-neck tanks. We call Gage not only a miracle but we also call him our Humpty Dumpty baby…he was taken apart and then put back together again.