mayashekhina
07-05-2007, 10:30 PM
I have actually put this on our site but thought Id put it here as well.
We knew about Beths unusual head shape since she was 25 weeks gestation, she sat in the breach position up by my ribs for most of the pregnancy. She would be 4 months old before she would see the plagiocephaly clinic about the shape of her head, but with so many other things going on at the time with feeding issues and follow ups for her heart the wait for her head was of no real concern. We eventually got seen by plagio which seemed to take an age, and we had the Xrays where they could pick up nothing conclusive but as Betty presented with such an unusual shape we had a subquential CT scan.
The eventual diagnosis was a fused Lambdoid suture and we were told a helmet would be more harm than good and surgery was advised as the best solution. Then the heart condition had to be taken into account it worried alot of people, it was not considered safe to have the operation until after her second heart procedure that would make her condition more stable. So I was advised to push for the second procedure as much as possible because the sooner the better. The operation we were told on her skull was purely to avoid the social impact and would not have any impact on any development etc. I already started to question its necessity at this time upon hearing this but Hubby was sure he wanted it done for Beth, he had such faith in the medical professionals after seeing what they were able to acheive with her heart he saw no reason to think that the risks of the surgery would be real factors in this situation.
So I set about pushing for the surgery, for the next 4 months I was ringing the hospital weekly and was being passed along, put on hold and forgotten about and got no where fast until I finally wrote a letter to the heart surgeon outlining our situation and we were in the following week.
After the surgery I got back in contact with the cranio clinic and they organised an appointment for 3 months time I was happy they were giving Beth time to recover and get strong. I still wasnt convinced about the necessity of the surgery and decided to do my homework and try and find people to talk with who had experienced surgery and people who had decided not to have the surgery and weigh up both sides with what I knew about Beth. Well that led me to this list, but trying to find someone who hadnt gone through with surgery was like trying to find a needle in a haystack luckily I was obsessed and wouldnt let it go I searched through this list and the other capps list and found a couple of families and sent them some emails in the hope I would get a response I did and even got some photos so this left me with alot to deliberate.
We got to our appointment at the cranio clinic and was so impressed by the efficient team that presented there it was great They wanted to deliberate the whole picture of Beth before deciding on what course of action to take, the NS was missing so when I had my appointment with him the following week I had to try my best to relay what was planned well it was a big failure and the NS had failed to even read Beths file so viewed us as if the heart and head shape were the only probs factoring into the equation - he really missed the mark.
I was left quite unsure and insecure as to what to do next as I had no followup appointments set and really felt as though we had wasted our time. So I got hold of our complex care nurses and they organised a followup appointment with the plastic surgeon.
After this we had a grommets procedure for Beth to deal with, her first anesthetic outside the heart hospital aaarrggghhh so scary as Betty had a cardiac arrest with her very first anesthetic. We were told at this time it was lucky that it was a small anesthetic, and that grommets was not a life threatening procedure as if she did react they could easily stop the op, which made me immediately compare it to the risks involved with the head surgery. We had been previously warned that with children like Betty it was not unusual for them to regress after big surgeries as well meaning that all my hard work with physio, speech, feeding, and OT could be lost.
This left me with alot to think about and weigh up, I had no medical reason to necessitate the head surgery, I was risking so much for Beth how worthwhile was this surgery really going to be for Beth? so many questions and then I realised that if I made a list of the pros and cons and weighed them against each other at this moment in time our decision is clear we really should not go through with the surgery because Beths make up means that she is at increased risk of all the risks discussed and the risks definitely outweigh the benefits a gamble really not worth taking.
Well for the moment that is the way things stand, of course it may change should new knowledge come to light about the nature of Bettys head structures and the impacts they have on her growth, development and quality of life But for now I am happy that I have properly deliberated and reached the right decision for Beth by choosing to err on the side of caution.
We knew about Beths unusual head shape since she was 25 weeks gestation, she sat in the breach position up by my ribs for most of the pregnancy. She would be 4 months old before she would see the plagiocephaly clinic about the shape of her head, but with so many other things going on at the time with feeding issues and follow ups for her heart the wait for her head was of no real concern. We eventually got seen by plagio which seemed to take an age, and we had the Xrays where they could pick up nothing conclusive but as Betty presented with such an unusual shape we had a subquential CT scan.
The eventual diagnosis was a fused Lambdoid suture and we were told a helmet would be more harm than good and surgery was advised as the best solution. Then the heart condition had to be taken into account it worried alot of people, it was not considered safe to have the operation until after her second heart procedure that would make her condition more stable. So I was advised to push for the second procedure as much as possible because the sooner the better. The operation we were told on her skull was purely to avoid the social impact and would not have any impact on any development etc. I already started to question its necessity at this time upon hearing this but Hubby was sure he wanted it done for Beth, he had such faith in the medical professionals after seeing what they were able to acheive with her heart he saw no reason to think that the risks of the surgery would be real factors in this situation.
So I set about pushing for the surgery, for the next 4 months I was ringing the hospital weekly and was being passed along, put on hold and forgotten about and got no where fast until I finally wrote a letter to the heart surgeon outlining our situation and we were in the following week.
After the surgery I got back in contact with the cranio clinic and they organised an appointment for 3 months time I was happy they were giving Beth time to recover and get strong. I still wasnt convinced about the necessity of the surgery and decided to do my homework and try and find people to talk with who had experienced surgery and people who had decided not to have the surgery and weigh up both sides with what I knew about Beth. Well that led me to this list, but trying to find someone who hadnt gone through with surgery was like trying to find a needle in a haystack luckily I was obsessed and wouldnt let it go I searched through this list and the other capps list and found a couple of families and sent them some emails in the hope I would get a response I did and even got some photos so this left me with alot to deliberate.
We got to our appointment at the cranio clinic and was so impressed by the efficient team that presented there it was great They wanted to deliberate the whole picture of Beth before deciding on what course of action to take, the NS was missing so when I had my appointment with him the following week I had to try my best to relay what was planned well it was a big failure and the NS had failed to even read Beths file so viewed us as if the heart and head shape were the only probs factoring into the equation - he really missed the mark.
I was left quite unsure and insecure as to what to do next as I had no followup appointments set and really felt as though we had wasted our time. So I got hold of our complex care nurses and they organised a followup appointment with the plastic surgeon.
After this we had a grommets procedure for Beth to deal with, her first anesthetic outside the heart hospital aaarrggghhh so scary as Betty had a cardiac arrest with her very first anesthetic. We were told at this time it was lucky that it was a small anesthetic, and that grommets was not a life threatening procedure as if she did react they could easily stop the op, which made me immediately compare it to the risks involved with the head surgery. We had been previously warned that with children like Betty it was not unusual for them to regress after big surgeries as well meaning that all my hard work with physio, speech, feeding, and OT could be lost.
This left me with alot to think about and weigh up, I had no medical reason to necessitate the head surgery, I was risking so much for Beth how worthwhile was this surgery really going to be for Beth? so many questions and then I realised that if I made a list of the pros and cons and weighed them against each other at this moment in time our decision is clear we really should not go through with the surgery because Beths make up means that she is at increased risk of all the risks discussed and the risks definitely outweigh the benefits a gamble really not worth taking.
Well for the moment that is the way things stand, of course it may change should new knowledge come to light about the nature of Bettys head structures and the impacts they have on her growth, development and quality of life But for now I am happy that I have properly deliberated and reached the right decision for Beth by choosing to err on the side of caution.