As I watch helplessly Cathal going through the various stages of his recovery from open heart surgery, I have been wandering what odds he has beaten to be where he is and have what he has.
Statistics are not my forte, but I had to dabble in them at one stage. I don’t remember much, however I think I can still remember how to calculate the odds of a series of events happening. So if any statistician wants to correct any mistake I make along the way, please do so. And I must explain one thing: as the percentages I found vary greatly from one source to another, they are a lot of assumptions here. As the results will show, we come to a stage where the details don’t matter much any more.
Odds of Cathal being born with DS with a mother aged 28: 1/755
Odds of him having a congenital heart defect: 45% - so odds brought to 1/1,678
Odds of defect being Complete Atrio-Ventricular Septal Defect (AVSD): no exact figures, but most common with DS, so let’s say 50% = 1/3,356
Odds of having Pulmonary Stenosis (PS): again no exact figures, but quite common with DS as well, so let’s say 40% = 1/4,195
Odds of having Double Outlet Right Ventricle (DORV): not so common, major assumption here, let’s say 20% = 1/8,390
Add them up together, total so far = 1/15,941
Odds of having all three conditions at the same time? Hummmmm. I am making a call here, from the height of my non-existent knowledge in this field, and I say 10% - we are now reaching the dizzying heights of 1/79,705
So there we have it: 1 chance in close to 80,000.
And now for the little block on the recovery road. As a side issue of the surgery, a little part of his body has not been healing as expected. My little prince has had his fair share of misery in the last couple of weeks, all relating to attempts to stimulate this healing process. On Thursday last, as no lasting improvement had been observed, the cardio-surgical team called it: if no miracle occurs over the weekend, we will proceed with a more drastic action that has a great success rate, but is going to be very painful for Cathal…
Oh no, not again, no more pain, please, no more pain. It is so horrible to see such a young child in pain, despite the morphine and other drugs, to stand by his bed and feel so helpless, to wonder how you could take some of this on you and relieve him…
And he has been pocked, picked, tested, and what have you, so often at this stage, he does not trust the intentions of any of the clinicians: any one crossing the door into his room who is not either of his parents or a familiar face from “the outside” gets a strong telling off. And if this person touches him, cries and screams ensue… Who can blame him! I would do the same.
And guess what? The odds of this type of “hick-up” after open hear surgery is … 5%. So unless my calculator is deceiving me, the overall odds of Cathal being at the stage he is at are 1 chance in over 1.5 million!
Gosh! How lucky is my little prince?
I do not know if it is his luck coming around again. I do not know if it is my telling him that Enough Is Enough, that he has proven he can get a bull’s eye every time, that his Mammy and the Dad are quite exhausted and need a break, and that now we need some proper recovery... I do not know what is doing it, but, it seems, and I am very careful here, I do not want to jinks anything, but indeed it seems there have been definite signs of improvement in the last two days. As if the team’s decision on a plan of action had been enough to prove this might not be necessary after all.
So let’s all cross our fingers…
Having said all this, I have not even spoken about the incredible luck of Cathal being born in this era and this country, where a total repair of all three defects not only can be carried out, but is carried out, even on children with DS. It has not always been the case, and there are places on this planet where it is not the case.
And then he has also the incredible luck of having the parents he has, and the love they pour on him. And that cannot be taken for granted either!
In the mean time, looking at these odds, I am thinking that Cathal is very VERY precious indeed. Of course, I did not need any figures to prove this to me. I have known it since he was born.
Statistics are not my forte, but I had to dabble in them at one stage. I don’t remember much, however I think I can still remember how to calculate the odds of a series of events happening. So if any statistician wants to correct any mistake I make along the way, please do so. And I must explain one thing: as the percentages I found vary greatly from one source to another, they are a lot of assumptions here. As the results will show, we come to a stage where the details don’t matter much any more.
Odds of Cathal being born with DS with a mother aged 28: 1/755
Odds of him having a congenital heart defect: 45% - so odds brought to 1/1,678
Odds of defect being Complete Atrio-Ventricular Septal Defect (AVSD): no exact figures, but most common with DS, so let’s say 50% = 1/3,356
Odds of having Pulmonary Stenosis (PS): again no exact figures, but quite common with DS as well, so let’s say 40% = 1/4,195
Odds of having Double Outlet Right Ventricle (DORV): not so common, major assumption here, let’s say 20% = 1/8,390
Add them up together, total so far = 1/15,941
Odds of having all three conditions at the same time? Hummmmm. I am making a call here, from the height of my non-existent knowledge in this field, and I say 10% - we are now reaching the dizzying heights of 1/79,705
So there we have it: 1 chance in close to 80,000.
And now for the little block on the recovery road. As a side issue of the surgery, a little part of his body has not been healing as expected. My little prince has had his fair share of misery in the last couple of weeks, all relating to attempts to stimulate this healing process. On Thursday last, as no lasting improvement had been observed, the cardio-surgical team called it: if no miracle occurs over the weekend, we will proceed with a more drastic action that has a great success rate, but is going to be very painful for Cathal…
Oh no, not again, no more pain, please, no more pain. It is so horrible to see such a young child in pain, despite the morphine and other drugs, to stand by his bed and feel so helpless, to wonder how you could take some of this on you and relieve him…
And he has been pocked, picked, tested, and what have you, so often at this stage, he does not trust the intentions of any of the clinicians: any one crossing the door into his room who is not either of his parents or a familiar face from “the outside” gets a strong telling off. And if this person touches him, cries and screams ensue… Who can blame him! I would do the same.
And guess what? The odds of this type of “hick-up” after open hear surgery is … 5%. So unless my calculator is deceiving me, the overall odds of Cathal being at the stage he is at are 1 chance in over 1.5 million!
Gosh! How lucky is my little prince?
I do not know if it is his luck coming around again. I do not know if it is my telling him that Enough Is Enough, that he has proven he can get a bull’s eye every time, that his Mammy and the Dad are quite exhausted and need a break, and that now we need some proper recovery... I do not know what is doing it, but, it seems, and I am very careful here, I do not want to jinks anything, but indeed it seems there have been definite signs of improvement in the last two days. As if the team’s decision on a plan of action had been enough to prove this might not be necessary after all.
So let’s all cross our fingers…
Having said all this, I have not even spoken about the incredible luck of Cathal being born in this era and this country, where a total repair of all three defects not only can be carried out, but is carried out, even on children with DS. It has not always been the case, and there are places on this planet where it is not the case.
And then he has also the incredible luck of having the parents he has, and the love they pour on him. And that cannot be taken for granted either!
In the mean time, looking at these odds, I am thinking that Cathal is very VERY precious indeed. Of course, I did not need any figures to prove this to me. I have known it since he was born.
7 comments:
Hello Nan. This is Joyce. I have been so behind in reading blogs the past few weeks. I completely missed that Cathal had his heart surgery. It sounds like he is progressing along.
I saw your one note on Miss Sarah. Yes she did have heart surgery at 6 months (VSD & PDA). She had many little setbacks and a few complications so we had the pleasure of staying at the Cleveland Clinic for four months. Her heart is perfect now. She still has some trouble with her lungs from time to time, much like asthma and every year or two we see a pneumonia set in. But with intravenous antibiotics, she is up running around in a few days.
I will hope that Cathal continues to improve. I'm no math wiz myself, but regardless he has beat amazing odds. He looks strong too which surely helps with the recovery process. Hugs to you and the parents. I sure remember how tiring those nights in the hospital can be.
I would have said he is at least one in a million Nan P, and probably more like one in a billion ;)
Hope he keeps it up. Sending love and good wishes your way.
Mel
Nan
Thanks for the update - it cannot be easy to think about blogging when you have so much going on. I really hope these last few days have shown the improvement Cathal needs without further medical intervention.
Thinking of you all
-little man's mum
Poor little Cathal...he seems to be going through so much. I can only imagine what it's like to sit beside him and not be able to do anything but love him even more.
I think he most definitely feels all that extra love coming his way!
He is a strong little baby..... very resilient too. And I hope that continues to help his progress.
I'm so glad there's a little light shining down the tunnel and that he doesn't need any more surgery.
If he does though, at least you know it has a very good success rate.... at least the high odds are the other way round!
And he's in the VERY high stakes of having fantastic parents and Grandmother (and extended family too no doubt.)
I'll be keeping fingers crossed for him and will say a little prayer for him. xx J
Well I think you should buy a lottery ticket. Because you seem to be hitting the odds in every other area.
Feck Arse and Feck again!
I wish that just thinking good thoughts Cathals way could help. I sooooo get how upset and anxious that Mammy and Daddy must be now. Jaysus if we could take it on ourselves we would.
All you can keep doing is minding them nan. Making them eat and wash and tell them you will sit by the bed and do some worrying for a night while they go out for a few hours and rest easy.Give them permission to smile and be kind to each other for a night.
Actually. If you want to do that one evening I will come and meet you. Gotta meet that little carrot topped cutie one of these days and I am a first class worrier.
xx
(please tell me the hospital is on the southside?)
You don't know me, but I have connected with your blog through Don Crane in Indiana. I just had to comment on your blog about statistics. All of those numbers do have meaning, no matter how you arrived at them. Our Father in Heaven loves Cathal more than any of us here on earth could. And He has a grand and wonderful plan for this precious child's life, as well as for his parents and yours! There is true purpose in all of these events, no matter how hard they may seem to us right now. Seek Him and his purpose, and you will find an inexpressible joy. My prayers are with you.
Really behind in my reading and didn't realise that Cathal was having Heart Surgery.
Best wishes to you all and loads of hugs and kisses. xxxxx
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