Evan – Sagittal

At one week past-due, I was induced just after 11:00 AM and Evan was born at 6:12 PM June 22, 2012. It was a normal vaginal delivery…natural and unassisted. Shortly after birth I thought his head looked a little oval, but having two other kids prior to this I thought that in the first few days following birth it would likely change. Head shapes changed a little once they aren’t in such a small space, but his head didn’t change.

At my one month appointment I asked my family doctor if she thought it looked normal and she said it was a little long but didn’t see it as a problem. I carried on. Evan always sounded like he had a cold (right from birth) but he never had a runny nose or anything I thought that was strange (looking back I should have asked more questions if I had known what to ask), he also had some issues with breast feeding and had a bit of a tongue tie so I asked my doctor to give me a referral to someone to get that clipped. It wasn’t until I went to see this other doctor about the tongue tie that she asked me if I had his head shape looked at. That day I called my family doctor and told her to give me a referral to the head shape clinic.

Evan was 3 ½ months when I went into the head shape clinic. I thought they would tell me that he would need to wear a helmet and send me on my way. I imagined how people would look at him and think of me as the mother that leaves her kid in the crib all day. I never even heard of Craniosynostosis so when they told me that his sagittal suture was fused prematurely I was scared and confused. Did that even happen? I guess so and a lot more than you would think. I felt like an idiot for being so vain about how people would see me as a mother. My natural instinct was to jump straight to the most radical conclusion…my baby was going to die. I shed a lot of private tears as I breast fed him late at night and had nothing but my imagination to distract me. I started talking to people to get out of my own head, did a little research on the internet and that’s also when I stumbled on Cranio Care Bears and Our Cranio Circle on Facebook.
I am so grateful to have found this group of people that have gone through similar surgeries as Evan’s. I spent a lot of time texting moms from the group and they were there the day of the surgery to help me through. I can’t believe the strength I got from a bunch of strangers. Without that I would have felt so alone. It’s one thing for your friends or family to tell you everything will be ok, but it’s totally more reassuring to have a group of mommas tell you after they have been exactly where you are and have come out on the other side.
Anyway I saw the craniofacial team at the beginning of November to discuss Evan’s surgery. He was 4 ½ months now. They told me that with the schedule he would likely have his surgery late January, early February. The next day they phoned me and said his surgery was scheduled for December 5th. My heart sank! Three weeks didn’t seem long enough to hold my boy for the last time. I cried and cried and cried. I didn’t tell my husband I cried so much…he seemed to be holding it together fine. What a crazy imagination we have sometimes. It was hard to look at facts instead of fiction.
I got a package of love from Cranio Care Bears a couple days before December 5th. It truely lifted my spirits! It was all happening so fast. My two girls were sick with head colds the two weeks prior to Evan’s surgery and I worried he would get sick too and the surgery would be postponed. I never sprayed so much Lysol in my house EVER!!! Luckily he didn’t get the cold…hopefully I didn’t give him some other ailment from spraying that much chemical in the house…lol. We took Evan into the hospital for 7:30 AM and by 9:00 they took him from me and I had to completely surrender to the skilled hands of Dr. Gallagher and Dr. Frank of the ACH in Calgary.
I brought some scrapbooking to do while I waited. It kept my mind off of that dark place it didn’t need to be. I texted many mommas for support and by 11:30 Evan was out of surgery. They removed the centre part of his skull shortened it, flattened it and put it back in with dissolvable plates and screws. He received a blood transfusion on the table as I can only imagine how much blood is lost through the head and also when you are that small. It all seemed so routine like brushing your teeth or tying your shoes. Afterward I wondered why I even worried at all.
Evan was transferred to ICU and we met him down there. They told me his eyes may swell shut, but they never did. I’m glad for that because I could at least give him a little comfort being able to look at me. The poor little guy moaned and cried the whole first night. My heart broke, as only mothers can, when so helpless. My husband went home to take care of our other kids and I sat up all night with him. He drank breast milk from a bottle that night and tried to breast feed. It was awkward because I was scared of touching his head. They had him pretty sedated too.
At about 11:00PM that next day we were moved up to the regular unit (so 1 ½ days in ICU) after that every time I looked at Evan I saw an improvement. He kept taking his IV out and one time he did it he laughed at the unit nurse. Too funny until three of them came in and held him down to put a new one in. He pulled it out soon after again. They left it out this time and gave him an oral morphine which I was lucky enough to wear about 10 minutes later; I guess he was done with the drugs! We were in for a total of 5 days.
Evan is doing great now. They fitted him for a helmet that he is supposed to wear for 16 weeks to guide him in the right direction. I think his head looks great now. I’m so grateful to be a momma on the other side. Thanks so much to Cranio Care Bears and Our Cranio Circle for this wonderful network of people. I don’t know how I would have managed without the love and support of people who have gone through this too. It is a great thing you are doing here!