[tri-med] Re: Help needed

Hello,
 My son was born 3 months prem and in his 3rd week he was diagnosed with 
Trisomy 8 mosaic. Nobody had ever heard of it and so began a 6 month long 
battle of keeping my son alive. 
 He started to have the apneas around 4 weeks old but no one linked them to 
apneas at the time just prematurity. We would leave his side at around 10pm and 
by 1am we'd get a phone call to say he had stopped breathing but they had got 
him back. This went on with a few other complications in between until he was 
about 5 months old (and still in Special baby care unit) and I came in one 
morning and the doctors said he had had another episode and that they felt 
there was nothing  more they could do for him and that we had to to move him to 
a more specialized hospital about another 60 miles away. Now in between all 
this one of the doctors had said to me that she noticed that when my son had 
these episodes he was very hard to bag, almost like he was cutting his airways 
as it if in pain and I did say that I could hear him refluxing and they did do 
a reflux study and it came back inconclusive.
 So, when we got to this other hospital I literally grabed the consultant and 
said please listen to me that I thought that my son had reflux and that it 
needed checking. Well he did listen and the next day we went down for a barium 
swallow. As I was feeding my son the barium all the faces of the medical staff 
dropped and I said does my son have reflux? The doctor came over and said yes 
he did have significant reflux but he also had a malrotation of the gut and 
that he needed emergency operation to correct it. My son had the op and they 
tried not keep him under for too long but this  was mainly because of his 
chronic lung disease and the ventilation and the fact that he has a missing 
corpus callossum and this has shown to cause complications under anesthetic. 
After the op the only complication really was the fact that he had an epidural 
fitted after the op for pain relief so he could come of the vent quicker and 
the anesthetist nicked a vein putting it in and my son lost
 alot of blood before they removed it. Other  wise the op was a success and 
they also removed a meccals diverticulum and his appendix and do you know what, 
he has not had an apnea since and the doctors now believe that they were pain 
related.
 I hope this story is of some use as I can sympathize greatly with the feeling 
of hopelessness with the situation, we nearly lost our son across those 5 
months due to the apneas and it was all down to his malrotation.
 Katy. mum to 23 month old son with T8 mosaic.
----- Original Message ----
From: TRIER9@xxxxxxx
To: tri-med@xxxxxxxxxxxxx
Sent: Thursday, 29 June, 2006 4:38:28 PM
Subject: [tri-med] Help needed

Hello...the following question is from a wonderful nurse that is taking  care 
of a baby with a trisomy syndrome. She takes baby home whenever she has 4  
days off in a row!! Bio Mom is very depressed and cannot make any decisions at  
this time. 
 
Hope someone on our list can help.  Baby has malrotated bowels and  central & 
obstructive sleep anpnea .Doctors say she probably won't survive  the surgery 
for the bowels...due to the apnea
Here is her question....
 
 
 
 
 
The decision is ultimately up to her mom but I thought if I could find  out 
more about it I could give her that info to help her decide. Have you had  any 
experience with the bowel surgery or the sleep apnea or know of anyone who  
has? If so I would appreciate any input. 
 
 
 
Thanks in advance,
Laurie
Mom to Brianna w/t9p


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line







                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: