Nathan's story
Nathan was born on October 15th, 2004 - unexpectedly at home after a labour of only 35 minutes. I was off work from the beginning of July 2004 because of high blood pressure, which we eventually found out was caused by gall bladder attacks. Before we knew the real reason, it was suspected to be pre-eclampsia. As a result, I had regular ultrasounds. I didn't get very big during the pregnancy and the doctor was a little concerned about my lack of growth, but based on the head measurements from the ultrasounds, it was estimated that he would be around 7 - 7 1/2 pounds at birth. He was less than 6 pounds. His head has been around the 97th percentile since he was born. I always thought that his head looked a little off in the ultrasound pictures I was given but wrote it off as they can be hard to make out sometimes.
I didn't get to hold Nathan when he was born as the firemen and paramedics were anxious to get us to the hospital. Once there, he was immediately taken to the nursery to get checked out. After I was in a room, the pediatrician on call came in and informed me that Nathan had craniosynostosis dolicocephaly and would have to be referred to a neurosurgeon and have surgery. He said he had just diagnosed another baby born that week with the same condition and that it was pretty rare. That's about all I heard from that conversation. I had him write down the name of his condition and waited to see my baby.
It was very apparent that there was a problem. His little head was very long and narrow. When his own pediatrician arrived to check him out, he confirmed the on call doctor's suspicions. He said he would be faxing in a letter to the plastic surgeon and neurosurgeon the next day. It still didn't quite feel real and I was scared for Nathan.
I did a lot of research when I got home. By the time our appointment with the surgeons came 5 weeks later, I knew pretty much what to expect. As expected, it was obvious by looking at him what the diagnosis would be. A CT scan was ordered to confirm it, as well as to rule out the involvement of any other sutures and make sure there was no pressure on the brain. A date was set for surgery and the wait was on.
One of the worst things for me was the fear of the unknown. I tried to make sure that I knew exactly what was going to be happening every step of the way. I read everything I could find. I watched a documentary program that followed a set of twins who both had surgery for sagittal cranio. It was hard to see at first, knowing that my baby would soon be going through that, but I needed to know. I got in touch with a father whose son had the same surgery and he shared inter-operative photos of his son's surgery. Again, it was hard to see, but I had to know exactly what was going to happen. I don't think I could have handled any surprises and I believe that knowing everything made it a little easier.
Surgery day came and I was strangely calm. I had complete faith in the surgeons when it came time to hand Nathan over to the OR nurse. I knew that we were doing what was best for Nathan and that although the next few days would be rough, it was in his best interest. Here is Nathan's surgery story.
March 1st, 2005 - surgery day
We arrived at the hospital at 6:30 am to check in. Nathan had one more blood test and then the wait was on to make sure there was a bed available in the PICU. Confirmation came around 9:30 and we were taken down to the surgery floor. Nathan went through the doors and the nurse arranged to meet us at 11:30 with an update. True to her word, she met us in the PICU waiting room at 11:30 sharp and let us know that surgery had just begun about 15 minutes prior after he was sedated, the area was cleaned and he was positioned. She would be back about 1:30 with another update. At 1:30, everything was going well and was expected to last a couple more hours. At about 3:00 the neurosurgeon came out and said it was done! Everything went as planned with no surprises or complications and he would be brought out to the PICU once he was awake enough to remove the breathing tube. Nathan was brought out to the PICU at around 4:30. The moment I first saw him was the one time I was totally unprepared. I don't think anything can prepare you to see your baby like that and I just about lost it.
This is Nathan at 4 hours after surgery. His eyes are swollen shut, but there is no sign of any bruising. He has some swelling in his arms and legs, but that went away after a couple of days. He is being kept comfortable with codeine and Tylenol. When he is awake, he is understandably agitated that he can't open his eyes, but calms fairly well when touched or spoken to.
This is 7 hours after surgery. He is able to open one eye a little bit and is still on the codeine and Tylenol alternately. We tried him on clear fluids and he took it well, so he was back to his regular diet already.
March 2nd - 1 day post-op
Mom and Grandma spent the night at the hospital and were fortunate enough to get a parent room and get some sleep. The PICU nurses promised to come and get us right away if he got too distressed or had any problems. Obviously things went well, they didn't come get us. When we got back to the PICU, they were just about to come get us as he was HUNGRY!
He has both eyes open and managed a bit of a smile when he saw us - what a relief!! Looking around the PICU really puts things in perspective. There are so many kids that are so much worse off. Nathan is already starting to show signs of bouncing back. The doctors came by to check on him and decided that he is ready to go to the regular ward.
The head dressings and drain came off at around 4 that afternoon. He is only on regular Tylenol now.
March 3rd - 2 days post-op
Mom spent the night at the hospital with Nathan. He slept for 4 hour stretches, only waking up to eat. That is very normal for him. He didn't need any Tylenol through the night and woke up full of smiles.
The doctors and Mom both agreed - Nathan was doing well enough to go home!! We just had to wait for a visit from occupational therapy, they were lending us a mattress wedge and the sling that you see Nathan in above as the constant elevation of his head was the major factor of the reduced swelling.
After an uneventful ride home, Nathan was thrilled to see his big brother - and vice versa.
March 4th - 3 days post-op
3 days post-op, the only swelling is at the very back of the head and a little 'goose egg' spot over one ear. The incision line is healing well and will look much better when we can wash it - on Sunday. Last night Nathan slept the whole night through - from 8:30 pm until 6:30 the next morning! WOOHOO!!!!!!
March 5th - 4 days post-op
Well, the sleeping through the night last night was a fluke. Last night it was playtime from midnight until 3:30 am. At least he was happy throughout that time. And I got caught up on Survivor. I'm still in the pool at work! :) It's hard to believe that this kid went through major surgery 4 days ago. 4 days after my surgery I was just leaving the hospital with Tylenol 3s and feeling very sorry for myself. Then there's this 4 1/2 month old baby who just had a strip of bone removed from his head and various cuts made in the remaining bone and he's smiling and playing and only on Tylenol as a preventative measure. Simply amazing.
March 6th - 5 days post-op
Yay, it's bath day!!! Before today we couldn't bathe the incision line, and it was getting pretty goopy with the antibiotic ointment. Sponge baths just weren't the same for a kid who loves his bath time so he made the most of it today. He played for about 45 minutes and got quite pruny. But his head looks much better, I can't believe how quickly it is healing! Most of the swelling is gone, but there is a little bruising developing around the incision. He got a new blankie from a friend today and loves it - thanks Auntie Rita and family!!
Some before and after shots - incision shots, may be gross to some!
In this first set, the biggest difference is in Nathan's forehead - it's a little dark, but the best I can find for now. In the second picture, there is some swelling in the very back of his head which makes it look longer than it is now.
In this second set, you can really notice the difference in width!
March 9th - 8 days post-op
As we were warned, we are having sleep problems. Nathan is waking every couple of hours and all day yesterday and last night he wouldn't let me put him down. He seems to have a hard time getting comfortable - and who can fault him??
We went for a follow up appointment today, everyone is very happy with the healing and already obvious difference in the shape of Nathan's head. The swelling in the back of his head is minimal and down enough that we had the STARscan that will be used to order Nathan's helmet. This is Nathan in the STARscanner.
March 11th - 10 days post-op
Last night went a little better, he only woke twice from 9 until 6 this morning. He is healing amazingly well. He is an expert at flipping over from his belly to his back - which kind of freaks me out, he goes over so fast I feel that I have to catch his exposed little head before it hits the floor!
March 17th - 16 days post-op
Sleep problems continue, but healing is amazing! Nathan is still waking up almost every 2 hours. He doesn't stay awake for more than 15 minutes or so and it seems to be mostly for comfort feeding. If that's the worst after effect, I'll take it. The stitches are starting to dissolve and his scar is disappearing really fast. Hard to believe that he went through such a major surgery just 2 weeks ago, he's an amazing little guy!
March 29th - 28 days post-op
Wow, it's been a month already! We got the call today that Nathan's helmet is in, we go tomorrow to get it. He is doing remarkably well. Sleeping has been OK, he's back to where he was before surgery. Just in time to get used to sleeping in a helmet. Oh well, I shouldn't complain. Here are the top and side views of his scar on his one month post-op anniversary.
And here is a picture of Nathan and his big brother Dillon.
March 31st - 30 days post-op
We're on to the next phase of reconstruction, Nathan got his helmet yesterday! He took to it surprisingly well so far. Yesterday was fitting day, today is his first official day of wearing it. Today the schedule is one hour on, one hour off and he doesn't have to wear it for naps or overnight. Here is his first picture in his helmet.
April 2nd
Here we are on day 3 of the helmet adventure. Daytime hours - the waking ones, that is - are fine. He doesn't seem to mind it at all. Sleep time is a whole other story. He DOES NOT like to sleep with it. Today is supposed to be the first day that he wears it during naps and overnight. His first nap was in the car, so that was OK. This afternoon wasn't so easy. He would absolutely not nap with it on. We tried a pillow, holding him and letting him cry it out for a while. Nothing worked. I had to give up and take it off for nap, he was dripping with sweat from crying. He fell asleep immediately. I'm not holding out much hope for a peaceful night.... Cross your fingers for us.
April 11th
Nathan has been in his helmet for 23 hours a day for almost 2 weeks now. Things are going pretty well. We went back for a follow-up with the orthotics tech and he put a bunch more holes in the helmet for extra ventilation. It helps a little, but it still gets pretty steamy in there. Sleeping is going better. He never slept through the night before the surgery, so I guess you could say he is back to normal, being that he wakes up usually twice per night. His scar is getting better and better and only a couple stubborn stitches remain. Thanks for all your well wishes!
April 18th - 7 weeks post-op
Nathan is doing great! All of the stitches are gone and the scar is really fading. He is developmentally right on track. He can sit up on his own for a short time and for longer each day. He can roll over both ways. He loves cereal and his first veggie last night was peas - he couldn't get enough. He hasn't got any teeth yet, but is going through all the signs of teething. He 'talks' a lot (and quite loudly!) and although I would love to say that he can say Mama, I think it's just babbling. If I babble to him, he will mouth it back to me, so it's just a matter of time, I'm sure! He goes for a follow-up with the surgeons on Wednesday and if time permits, will get a STARscan (the 3D scan that was done for helmet fitting) done.
April 22nd
We had our follow-up on Wednesday. Although the incision is healing well, the STARscan showed that Nathan's head is still growing from front to back, which is not what we want. Nathan wasn't very impressed with the whole procedure and it took a few tries to get a usable scan, so hopefully the scan results were because of the screaming and moving. He will have another scan next month to check again and will get a couple of adjustments made to his helmet.
Meet the team that have done such an amazing job looking after Nathan. They are truly a wonderful group of people who always listen to our concerns, answer our questions and kept us feeling comfortable and confident throughout this whole experience.
Dr. McDonald, neurosurgeon
Gail (neuroscience nurse clinician) and Dr. McDonald
Dr. Ross, plastic surgeon
Nurse Kathy, Dr. Ross' nurse - measuring Nathan's head (and Grandma holding him)
Missing from this group are our wonderful orthotists Luke and Bram, who are also a very important part of this whole process.
May 2nd - 2 months post op
Here are some before and after pictures, what a difference - and will be even more different after helmet therapy is done!
May 19th - 11 weeks post-op
We saw Dr. McDonald and Dr. Ross yesterday and they are both happy with Nathan's progress, as are we. The bone is growing back just as it is supposed to and we will continue with the helmet therapy for a couple more months. We mentioned to Dr. McDonald that we noticed some dark areas, like bruising, on Nathan's head - in the curved areas of the scar over his ears, on top of his head where the bone was removed and at the back towards the base of the skull. He said that it could have been bruising or blood pooling. Either way, it was nothing to worry about. We had another scan done, this one went much better (no tears!) and there was no concern raised this time about his head still growing longer. Our next appointment isn't until August. Hopefully then he will be a helmet grad!
Some more before and after comparisons...
Nathan is 8 months old tomorrow! He went for a check up with his pediatrician yesterday. He is 16 pounds 12 ounces and 26 1/2 inches long. His head measures 47 centimeters. His height and weight are still consistent in the 10-25 percentile and his head is still in the 97 percentile. He's finally getting some hair, as you can see in the above pictures. It's even long enough that it pokes through the holes in his helmet! He's trying really hard to crawl, but can't quite get that leg out from underneath himself when he leans over. There are 3 teeth out already and 3 more ready to pop through - no wonder he's been so fussy the last couple of days!
Man, time flies! Nathan is 9 months old!! Since the last entry, Nathan has learned to crawl and can pull himself up in his crib. He will make walking motions when you support him. His head must be growing, he has seen the orthotist 3 times this week. He had 2 pressure spots on his forehead and now his entire forehead is red and irritated. We're leaving his helmet off until his appointment tomorrow to give it a chance to heal. Poor guy has never bumped his head before now - he's not impressed with it at all. He had one stubborn stitch underneath the skin on his head that finally worked it's way out yesterday so they are officially all out. You can't see the scar underneath the little hair he has. We just got off the phone with the plastic surgeon's office, who postponed his follow-up appointment until August 24th.
August 3rd - 5 months post-op
Yesterday Nathan had an appointment at the orthotist. They made some pretty big adjustments in the front area, rounding out the top quite a bit. That seems to be the last area that needs improvement. Their opinion is that Nathan will be done with his helmet after our August 24th appointment! Of course, this is subject to Dr. Ross' approval. I have found that I have absolutely no concept of what a 'normal' head looks like anymore. When we go to football games, I find myself analyzing the shapes of their shaved heads more than I watch the game. There is obviously a huge improvement in the before and after pictures, so that's what I'm going by, otherwise, I could analyze his poor little head to death!
Yesterday Nathan had appointments with both Dr. Ross and Dr. McDonald. The orthotist was also there, as he does the STARscan on all of the cranio and plagio kids at the clinic. The latest results show that there was a marked improvement in the shape of Nathan's head since the last scan in May, although he still has a mild elongated shape. Based on these results, the decision was made by all of us to keep Nathan in the helmet for a couple more months. Dr. Ross feels that there are a couple more months of fast head growth that will allow for cosmetic improvement and that by keeping him in the helmet during this time it will help hold the front to back growth and decrease the chances of having a second surgery. Although I knew in the back of my mind that this was a possibility, having it said out loud again hit me. So the prescription was written and the new helmet is on order as Nathan has outgrown the other one. The orthotists will call when it arrives and we will go get it fitted, this should be in a couple of weeks. Our next followup with the surgeons is October 5th - 2 days after I go back to work. Good thing I have an amazing boss and great company that understands why I'm already booking time off when I'm not even back to work yet - thanks guys!!! Here are some pictures of Nathan 6 months post-op.
September 12th - 6 months post-op
Nathan developed some leaky pressure spots on his forehead over the weekend and spent the weekend without it on. We called the orthotist first thing this morning to get in and get it fixed. When we got there, his new helmet had arrived. It looks so much bigger than the other one! I'll post some pictures after Nathan wakes up. Anyways, we got it fitted, got the ventilation holes drilled and were off. He has 3 weeks in it before our next follow-up and scan so we'll see what they say then.
October 5th - 7 months post-op
We have a helmet grad!!! Nathan's head measurements show that his head growth is slow enough that the helmet won't help anymore so we're done!! It also shows that according to the numbers, his head shape is close to the lower end of the normal range of shape and that's good enough for me. He looks great! We'll go back in 3 months to make sure the shape isn't regressing, but for now we're done. Poor Nathan, he has bumped his head twice in the last 2 hours. He's not used to feeling pain from that, it's all new to him. It'll also be nice to be able to kiss his head. Plus it won't hurt so much when he head butts me! :)
October 16th - 7 1/2 months post-op
Nathan is 1 year old! He had 2 birthday parties - one last weekend on Thanksgiving so he could celebrate with our out-of-town family, and one yesterday on his actual birthday. It was nice to be able to celebrate helmet free. Grandma made Nathan's cake last weekend and brother Dillon decorated it all by himself. Nathan loved it!!
Nathan has finally figured out that bumping his head hurts. He is starting to be more careful - good thing too, because he is starting to walk!!!! He can take 3 or 4 steps by himself. My little guy is growing up fast. :( Here are a few pictures from his birthday parties.
December 12 - 9 1/2 months post-op
Wow, I've fallen behind on my updates! Nathan is doing great! He is walking - got the hang of it a couple days after the last entry and is now unstoppable. He loves daycare, although I miss being home with the boys. He still doesn't have much hair, which makes his forehead still seem a little big, but the hair he does have covers his scar so that you can barely see it. He's not talking yet, but leaves little doubt about what he wants with his pointing and grunting. He is fascinated by the Christmas tree, especially the lights that flash and play carols. He will sit there and dance along to the music. Hopefully I will be able to get a good Christmas picture of him and his brother soon.
January 25th - almost 11 months post-op
We had a follow-up today with Dr. Ross, Dr. McDonald and got to see Luke, the orthotist too! Everyone (including me!) is very happy with the way his head is looking. It is still a little narrow at the temples, but wouldn't be as noticeable if he had hair - and I have been assured that he will grow hair. He has some bumps on the back of his head that I was a little concerned about, but they are there because that is where the bone cuts stop. After noting all the little 'imperfections', it is important to remember that nobody has a perfectly round smooth head and these bumps and dips are all fine. His head shape is 150% better than it was and we don't want or expect a perfectly round head. Our team did an amazing job and we are eternally grateful to them all. There is very little chance that things will regress now, so we are almost in the clear!! They do follow-up for a couple of years post-op though, so we go back in July.
Here are a couple of pictures of my camera shy guy. Ignore the crumbs, I had to catch him while he was enjoying Dillon's homemade banana nut cake. :)
March 1st, 2006 - 1 year post-op anniversary!!!
Wow, it's been exactly a year since the big day! Time has flown by and it's incredible - you would never know by looking at Nathan what he went through. After being so worried about his head shape at his follow-up 5 weeks ago, I swear his head has filled out even more! Even though he still has no hair to speak of, you can barely see the scar. It has healed so well! I have no regrets about going through with the surgery. Although it was terrifying at the time, he bounced back so quickly it made me feel much better about it all.
July 12th, 2006 - 16 months post-op
We had follow up appointments with Drs. Ross and McDonald today and we are all still happy with Nathan's recovery. At the last appointment, I noticed that his head still seemed a little narrow at the temples, but I think it has rounded out since then. His scar is almost invisible on one side and the top, but a little thicker on the other side. Dr. Ross said that Nathan may want it touched up a little when he's older. Otherwise, no problems. We go back in January for one more 'six month visit' as Dr. Ross says that the 2 year mark is where you can see regression of the shape, although it is rare. After that, it will be once a year.
December 16th, 2006 - 21 months post-op
Nathan turned 2 in October and is busy getting ready for Christmas. He has a little bit of hair - enough to cover the scar. The shape seems to be getting better and better, hopefully our follow-up appointment in January will confirm this. If all is well at this upcoming appointment, we will only have yearly appointments from then on. Developmentally he is great, he's bursting with new words every day and can put his own jacket on already.
January 10th, 2007 - 22 months post-op
We saw Drs. Ross and McDonald and Luke (the orthotist) today. Everything went great! Dr. McDonald mentioned that he was still slightly narrowed at the temples, but that may fill out more as facial muscles develop. Dr. Ross said that the one side of Nathan's scar, which is slightly wider than the other, can be fixed at a later time if Nathan chooses. They both feel that his shape is still a little elongated, but compared to before surgery... well, there is no comparison. There is no telling how much worse it would be if untreated - and it definitely would have been much worse. All in all, we are all very pleased with the results and we will only go back once a year for monitoring from now on. Not that they are expecting any problems, but the skull doesn't stop growing for a few years. I think I finally feel like we are out of the woods!!
July 2007 - 29 months post-op
Nothing really to report, but it's been a while since the last update and apparently pictures are wanted! Nathan is doing great and really enjoying spending lots of time at the cottage this summer.
December 23, 2007 - 33 months post-op
Nathan continues to do well with no apparent problems. Now that he finally has some hair, you can't tell that he ever had a problem. He is a perfectly normal 3 year old. He is extremely bright and very verbal, so I have no concerns about development problems. Our next follow-up appointment is January 23rd with both Drs. Ross and McDonald. I hope everyone has a wonderful Christmas and Happy New Year.
January 23, 2008 - 34 months post-op
Nathan's follow-up was quick and painless - both the doctors and I are very happy with the results. They have no concerns and neither do I, we're done for another year!