This is a post I’ve been meaning to write for some time now, a lot of people come to this blog after searching sagittal craniosynostosis so I thought I would take the time to write out Raeca’s story. I know the first thing I did when we were given the diagnosis of sagittal craniosynostosis was Google it like crazy, I just wanted to read a full story that would encourage me and help get rid of some of the fear I had of the unknown.
This story might not be all that brief but I wanted to share it for all those parents and grandparents out there who are in that same spot, Googling those same words because they have that same fear.
I’ve tried to keep everything as accurate as possible but I’m already forgetting a lot of the details and of course the journals where I would possibly have some of this written down are all packed away right now. If I remember more details as time goes on I’ll be sure to update this post.
On Saturday, October 2, 2010 Raeca was born, a full 10 days over her due date as the doctors had figured it, but right on the date I had calculated for her. We thought she was perfect in every way. The pregnancy had been relatively smooth, the doctors were worried that she was measuring small so we had a few extra ultrasounds done but she was doing well and she weighed in at 7lbs 9oz at birth and 20 inches long? (I think, man, it’s been almost 4 years, and I’m already forgetting). Our hospital stay was short and uneventful, we were released to go home on the following Monday.
A few days after she was born I noticed that her head was a little oddly shaped but didn’t say anything to anyone. I remembered that right after she was born the doctor said she came out with her hand up by her head so I figured that was maybe why it seemed to be a bit flat on the side and thought it would just take a little time to smooth out.
As the weeks went on I became increasingly aware of the flatness of the sides of her head. I had lot of other friends having babies around the same time and they were all concerned about the flatness of the back of their babies heads since doctors currently recommend babies sleep on their backs so it seemed strange that my baby was having the exact opposite problem.
At her 6 week check up Raeca’s doctor mentioned that her soft spot was very small and almost closed (they aren’t supposed to close until 18 months or so). I believe it was at this time it was mentioned that they would file the paperwork to refer her to a specialist.
The one disadvantage to the health care in Canada is the long wait times. We never did hear anything after that.
Then at around 5 months (the end of February 2011) we ended up having to take Raeca in to the emergency room as she had some eczema that quickly got infected, despite two trips to the doctor the day before and day of but it didn’t go away and only got worse.
in the hospital, the only place they could get the IV in was the top of her head
This trip ended up being a blessing in disguise, they admitted Raeca fairly quickly and I remember hearing the nurse call up to pediatrics upstairs and from the sounds of things she was talking to someone we knew. Which wasn’t a huge surprise, we live in a small area and know a lot of nurses that work on peds in that hospital. But it turns out she wasn’t talking to a nurse but rather a pediatrician I knew because I had taken her family photos just the fall before, it was nice to have a pediatrician we knew and trusted. After Raeca was set up with antibiotics for the infection the doctor mentioned her head right away, and she said she would make sure to not release Rae until a specialist had been in to look at her. What a blessing that turned out to be! I think we stayed two or three nights in the hospital and one day a neurosurgeon did come up to look at her with his team and got some x-rays ordered to be done while she was still in the hospital. Then we were told we’d get an appointment set up for March with the neurosurgeon and go from there.
In March we met with the surgeon again and things were a little inconclusive. Of course we didn’t want our precious little girl to have to have surgery but we didn’t want to make the wrong decision by saying she wouldn’t have the surgery and then regretting that decision.
So in May Rae went in for a CT scan in which we hoped to get a few more answers.
waiting for the scan in her cute little gown
and contrary to how it looks in this photo she does have two arms
The results came back pretty positive, there wasn’t pressure on her brain (aka her skull was big enough for her brain) so the surgery would be purely cosmetic but at this point her head had continued to grow long and not round and the neurosurgeon strongly suggested we do the surgery. That was all we needed to hear and we agreed with him.
On May 31st, Jared’s birthday we got the letter with her surgery date: July 11th, Rae would be just over 9 months at the time.
July 10th, 2011 – the day before her surgery
I wanted to document how long and narrow her head had grown
Monday, July 11th came and we needed to be at the hospital by 6am. While we were sitting there waiting for her to be admitted I remember looking at our paperwork and the section where it said that the surgery was funded by The Government of Saskatchewan. Honestly, I’d never cared much for public health care but in that moment I was ever so grateful. I remember reading on forums before her surgery that this same procedure had cost people $10,000+, it was so nice to not have to worry about that and I could just focus on her.
She was a trooper that morning, she wasn’t allowed to eat or drink since the evening before and between all the paperwork and our meeting with the anesthesiologist and other random doctors and nurses it was a few hours before she was ready to go in for surgery. When we finally went in to the room before they took her to the operating room I remember we were sitting by an older couple, the woman had cancer and was waiting to have surgery as well and Rae kept looking over at her and smiling, oblivious to what lay ahead for both of them but I loved that she was giving that lady something to smile about.
Then a nurse came to take Raeca, I found it very hard to let go but managed to keep it together until we got to the waiting room where both my parents and Jared’s parents were waiting, and then I finally let myself cry.
The procedure involves the surgeon cutting open the skull from one ear all the way up and over to her other ear and cutting pieces of the bone away where the soft spots should be. In addition they flattened the back of her head, I never did care to look up what that all involves.
I guess it took them awhile to get started because it took longer than they said it was going to but after a few hours we finally saw the surgeon coming down the hall. I remember nothing about what he said to us other than everything had gone well. That’s all my mother’s heart needed to hear.
It wasn’t long after that that I was allowed into the recovery room to be there when she woke up. She had a bandage over her head which I had expected but I did not expect her to be so swollen already and over her whole body. Honestly, I hardly even recognized her.
When she came to she was both thirsty and hungry, though couldn’t really keep much down. After a bit of time in recovery she was moved up to the observation room, I think we were in there for only one night if I remember correctly. Slowly her one eye swelled shut, and then the other started, but boy, did her smile melt my heart.
the day after surgery
her whole body was so swollen that she didn’t fit into the sleepers we had brought for her
She was moved into a regular room later in the day on Tuesday which was nice, she needed to be checked by nurses less often which meant she could sleep a little bit better.
she definitely swelled up more on Wednesday
and if I remember correctly was having fun here, just maybe not for the photo
I remember her filling diaper after diaper with liquid as her swelling reduced. By Thursday both her eyes were starting to open back up, and that morning she was released from the hospital!
Thursday afternoon at home!
her head is definitely still swollen but her eyes (and the rest of her body) are looking a lot better
It amazes me how fast kids can heal, that exact surgery would have adults out for weeks.
July 25th – two weeks after surgery
One thing I did not expect or prepare for was the number of sleepless nights we would have after the surgery. She didn’t like lying down in general (which made diaper changing very difficult) and for three or four weeks she would just not sleep at night. I tried every single trick in the book over and over again. There were a couple of nights where I put her in the car and drove to the city and got myself a donut, she would usually sleep well on the drive but as soon as we’d stop she’d be awake. It was probably the hardest part of it all for me. But eventually she started sleeping better so I could too.
Some of my favorite photos were taken just a month after her surgery:
taken by Matt Ramage
As for how Raeca is doing now: she is great! Her soft spot has still not closed back up quite all the way but the neurosurgeon hasn’t been concerned about it.
I’ve shared a couple of updates on here before:
Six Months Post-Op
One Year Post-Op
Another Update (15-ish months Post Op)
She is now just a few weeks from turning four and loves Hot Wheels cars, everything pink and princessy and of course, preschool.
If you came across this blog after finding out your child has sagittal craniosynostosis feel free to leave me a comment or contact me through the contact button at the top of the page if you have additional questions.