Emmett was born on February 5th, 2013, the same day as my sister and one day after his due date. He was going to be our second child. The evening I went into labor started off normal, my husband was making dinner as I was playing with our daughter Elianna. Then my water broke. My daughter was induced so I had not experienced this before. Half an hour later the contractions were getting pretty strong and close together. After two girlfriends arrived to watch our daughter, off to the hospital we raced.
The evening then started to go in slow motion. I did not have my mind set on an epidural but as we arrived at the hospital I requested it. But I just had this feeling I would not get it in time. I was right. After I was given it, I suddenly felt the urge to push. Four or five big incredibly painful pushes later, he was born with me screaming.
Looking back now I wonder if it was painful because his sagittal suture was fused. He was 8 lbs, 1 once, just an ounce bigger than his sister.
We were in the hospital for two days, and after his sister gave him a birthday balloon and mini cupcake, home we went :-)
He was a very normal baby and things were going as you would expect. Around his two month check up I began to think that his head looked a little small compared to the rest of his body. A little narrow. On a trip home to visit family our mother in law suspected something was wrong but didn’t want to say anything as she knew his two month check up was coming in a few days. She is a retired nurse. At his check up the doctor checked his soft spot. She said she didn’t feel much of one. I knew this was not good. I asked what that meant. She said that she would send us for an X-Ray and refer us to a pediatrician. She said it may mean he would need to wear a helmet. She had been my family doctor for over ten years. I don’t know if she didn’t really know what it all meant or if she just didn’t want to be the one to break it to me.
Immediately after our appt I went online to start researching. I was shocked and devastated. My husband began to go into denial. He said I was self diagnosing. He was right, but I also wanted to be prepared for the visit with the pediatrician. I wanted to educate myself so I would know what kind of questions to ask. Best case he would just have to wear a helmet, worst case it was surgery. At that time we didn’t know what suture had fused. But when I looked at photos online I began to believe it was the sagittal suture.
We did the X-ray right away and less than ten days later we went to the pediatrician. She confirmed that the sagittal suture had fused and we would need to see a neurosurgeon. My husband wasn’t able to make it to the appt until it was finished. My mother in law was with me to help watch my daughter in the office. The pediatrician said I was very strong, until that point I had not started crying. And then I broke down. It was unfathomable to me. How could this be happening?
On to more research again. That is how I tried to get through it, trying to know as much as possible. My husband and I decided on the type of surgery we would want Emmett to have, as minimally invasive as possible. We wanted him to have the endoscopic procedure and helmet therapy after.
At three months old he had his visit to the neurosurgeon. Dr. Singhal was great. We met him at BC Childrens Hospital. Before we went to the appt I reached out to friends on Facebook. It turned out that I had a friend who had a family friend go thru exactly the same thing eight years ago. He gave us their contact info and I asked a ton of questions. They were very happy with Childrens hospital and that made us feel so much better.
At the appt Dr. Singhal went over the surgery options and risks. He had done many of the traditional type of surgery and only 6 or 7 endoscopically. My heart sank. After deciding that was the type of surgery we wanted but the surgeon had not performed that many, I didn’t know what to do. I couldn’t imagine the other options for Emmett. This was hard enough. He assured us he was conservative, if he didn’t feel that option A was workable he would switch to the traditional more invasive surgery. He told us he had done many brain tumor surgeries with the endoscopic instruments, just not as many for craniosynstosis. So we decided to stay the course.
We baptized him on Mothers Day 2013, and two days later, May 14, 2013 he went in for surgery. I felt good, I had been visualizing only positive outcomes. I had a girlfriend who had a friend who was a nurse at the hospital. It turned out that she was going to be in Emmett’s surgery. I had not met her yet but knew her name. It was time to give him to the surgery team. A nurse came and introduced herself and then winked to me. I gave my son to my girlfriends friend with a heavy heart. But also felt he was in very good hands.
He was out of surgery thirty minutes early, we were elated to talk to the surgeon. He said everything went well and we could see Emmett soon. After hugs and tears we waited and waited. He was in recovery for along time before they would let us see him. I was getting worried. Paulina took us to him. An angel again she was!
We stayed one night and went home the next afternoon. I was worried about his stitches but all went well. He was fitted for his helmet a couple weeks later. That he did not like! Then on to helmet therapy we went, over the heat of the summer. Poor Emmett! But six months later, a few weeks before Christmas we were finished. We have had his one year check up and he is doing and looking great.
This was hands down the hardest thing my husband and I had been through. I never thought we would make it to this side, as everyone says. Believe you will. Reach out, you never know who has been through the same thing. I was amazed at the support we received when we did. Since Emmett’s surgery I have had a friends cousin in England go through the same diagnosis with their baby, on Halloween we met a Grandpa down the street whose Grandson has had the surgery. In talking about it you educate others and you may help a Mom or Dad out there get an earlier diagnosis.
Every day I send prayers to all the little ones you post on your page. It amazes me still how common this diagnosis seems to be. Somewhere in this world every day a baby or child is having a surgery. Thank you for your website, thank you for giving parents hope! As you know there are days when it is all that we are hanging on to :-)