Nicholas was initially introduced to the plastic surgeon when he was five weeks old. The plastic surgeon told us that Nick had trigonocephaly. Trigonocephaly is the name given to the type of craniosynostosis that occurs when the metopic suture fuses early. When Nick was born there was a ridge running down the centre of his forehead which was the fused metopic suture. See the photo above which was taken when Nick was 4 days old. As Nick got older his forehead became more triangular in shape and his eyes looked more and more prominent. He developed a receded forehead and he could roll his eyes up and see us above him.
At 8 months Nicholas had his first operation. In this operation the plastic surgeon removed the fused bone running down the centre of his forehead. Then he reshaped Nick's forehead and brought the right and left hand sides of his forehead forward to match the middle and then brought the whole forehead quite a way forward. The purpose of bringing the forehead forward was to provide protection for Nick's eyes as well as allowing room for the brain to grow. The doctors also removed a dermoid cyst which was growing under the skin above his left eye. A dermoid cyst is a saclike growth that is present at birth. It contains structures such as hair, fluid, or skin glands that can be found in the skin.
We were told after the operation that Nick had pressure on his brain which may explain some of his behaviours that he was exhibiting before the operation. For a while before the operation Nick was irritable, he vomited, he would pull on his ears and he would cry. We put all of this down to teething. After the operation this behaviour stopped so we think that it was probably due to the pressure.
The operation took about 4 1/2 hours. Nick went to ICU for 24 hours. He was not very swollen, did not need to be ventilated and did not have as many tubes coming out of him as Melissa had so we did not feel as stressed as we had with her. The doctors told us that everything had gone very smoothly so that was even better. But when we saw him the next morning we got a shock. His eyes had become very swollen overnight and turned reddish-purple. The swelling got worse during the day.
Nick went back to the ward 24 hours after being in ICU. I held him up most of the day, every day, hoping that the fluid would drain from his eyes but it did not. Nick's swelling became severe. His little eyes looked like enormous purpley-red over-sized plums. They became firmly swollen shut. The swelling was much more severe then Melissa's. The plastic surgeon said that they were at the very severe end of swelling.
It took 5 days for Nick's eyes to open. On the Sunday following the operation Nick got very distressed whilst the doctors were trying to take blood for a blood test and this caused him to open them. After that the swelling started coming down much more quickly.
Nick found it hard having his eyes swollen shut. By the fifth day he was starting to feel better in himself but he began to get quite upset with not being able to see. It was a huge relief when he could.
Two days after Nick's operation he developed a sudden high temperature and tests were done to see if a reason could be found. The doctors thought it may have been something like an urinary tract infection from having a catheter. No cause could be found but the CRPs in his blood, which fight infection, were up (normal is 6, they were 68) so there was something going on. The Infections Diseases doctor decided to treat the infection as Meningitis. It was unconfirmed as Meningitis. The only way to confirm it was to give Nick a lumber punch which the ID doctor did not want to do. So he was given a broad spectrum antibiotic and the temperature came down. Nick was put into an isolation room which he was unable to leave for 9 days.
Operation 2 - Insertion of PICC Line
Two days after being on the antibiotics Nick's IV line stopped working. Three doctors tried to find a vein where they could put another one but no one was able. That was a very traumatic ordeal to witness. Having your baby being used as a pin cushion is difficult to watch. Your motherly or fatherly instinct is to get your baby out of there but you can't. So on the Saturday afternoon Nick went back into theatre to have a PICC line put in. It is a internal semi-permanent tube that went in through Nick's foot all the way up his body to an artery in his chest. This operation took 1 1/2 hours. The waiting was stressful. The operation being 4 days after his first one was stressful enough in itself and then we weren't told how long this operation would take. We were really starting to get worried as the time dragged on. The PICC line lasted for 9 days and then stopped working. Nick was to have the antibiotics for one more day but it was decided that they could be stopped, otherwise he needed to have injections in his bottom which was deemed too cruel if it could be avoided.
Nick was given a blood test two weeks after his operation, and his CRPs had gone down to 13. We were told that that was satisfactory and that he could go home. That was nice to hear, except that Melissa had been admitted during that time so I wasn't going anywhere... But Nick got to go home.
It must be noted that the plastic surgeon did not think Nick had Meningitis. He believed that the temperature was caused by the body's reaction to the severe swelling. The neurosurgeon said that he didn't think there was any way that the Meningitis could have gotten to the brain during the operation but he said that the infectious diseases doctors knew what they were doing. We also heard on the grapeview from other parents that there had been other babies come down with the same symptoms and that it may have come from the operating theatre. We will never know but the main thing is Nicholas doesn't seem to have suffered any ill-effects from it.
The photo below was taken 12 days after Nick's operation. His eyes were still bruised and slightly swollen.
A roller coaster ride of emotions was what I experienced leading up to Nick's operation. There are the initial emotions when the plastic surgeon tells you that he is going to operate. Then you get another pump of adrenalin when you receive the booking letter in the mail. Then your mind goes through all of the 'what ifs' and 'will he be ok?' etc. You get yourself psyched up for the operation - you know it will be a long wait, your baby's head is being cut open, they will be going to PICU, they will have swelling...it tears your heart apart and circles in your mind.
At our hospital there is no guarantee that the operation will be on until the morning of the op, due to limited PICU beds, so even though you are in hospital (the baby is admitted the day before for blood tests and general observation) you still are unsure as to what's going to happen until that morning.
You then give your precious baby over to the surgeons which is one of the hardest things in the world to do. Even though you know they are competent there are always those things called complications... Then the wait happens. You worry for hours until you hear that your baby is out of theatre. At our hospital there is a parent waiting lounge. As the hours tick by you watch a lot of other parents come and go as their children come out of theatre and that in itself is stressful. When the operation is over there is the relief that everything went well (or more stress if there were complications) and then the maternal instinct to want to get into PICU to see your baby, but having to wait until they are ready.
When you are allowed into PICU you see your baby lying there and all sorts of emotions race through your head. This time it was not too stressful and we felt even relief as Nick looked good and we knew that everything had gone well. The next morning though when we saw that Nick's swelling had increased we were a little stressed but more disappointed as we had thought he was going to miss out on the swelling. Of course at that time we did not know that he would develop such severe swelling and stay so swollen for so long.
Being released from PICU is good because you know that's the next step in the recovery. You know that once your baby is in the ward that you are on the downward side of the hill.
But when Nick had the temperature our stress levels rose sharply mainly from the unknown. Waiting for the test results, waiting for the doctors to decide what they were going to do, having the temperature keep rising, and then be told it might be Meningitis which is a terrible disease with serious consequences if not caught in time. The stress then came down when Nick started the antibiotics and his temperature did come down. You put your faith in the infectious diseases doctors.
After that you are so very tired but have to keep on being mummy. You run on lack of sleep and maternal love. Nick only wanted me during his fortnight in hospital which didn't give me much of a break. But even though I was so exhausted and stressed I would not have not been there for him.
It was good to get Nick home after the operation. In the second week in hospital he began mixing up night and day and I wasn't able to get much sleep. Melissa and Joe would come during the day so I would spend time with Melissa, giving her attention, and then Nick would be awake for half the night. It became like torture. On one night I became very upset. The nurse had attached an alarm to Nick because he was sleeping on his stomach. The alarm went off but no one came to check on him or to turn it off, for what seemed like an eternity. Nick got more distressed the longer the alarm went on and I got more distressed, the more distressed he got. Anyway I cried and cried and cried which I think I needed. I had been so strong for so long. Anyway the alarm did not get turned back on. Melissa's nights in hospital were so much more easier.
This operation changed the shape of Nick's forehead and because his forehead has been advanced, he now has protection for his eyes and they look smaller then they did. His left eye though is more prominent then his right, as it was before his operation.
Once Nick was home and back in his normal routine we noticed a great improvement in his behaviour. He ate and drank so much more, he was more happy, his speech improved and his general development progressed more quickly. Nick had an overactive tear duct in his left eye before the operation, it too was fixed. We were happy. The one thing we did notice was that Nick still had a slight ridge down towards his nose. You can see it in the photo below. We were told that this was the fused metopic suture bone. In the operation the plastic surgeon had flattened the bone (a bit like panel beating). He said that he was not able to cut out the ridge because the bone was too thin.
Fused Lamboid Sutures:We didn't see the doctors for about 5 months prior to the operation and in that time Nick's other sutures had fused. The fusion of his lamboid sutures at the back of Nick's head made the back of his head flat. We brought this to the doctor's attention but he said that doing the front was much more important and that Nick's hair (when it eventually grows!) would cover the flat spot. Time will tell if anything will need doing. This photo was taken at 10 months looking down the back of his head.
© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission.