GuestbookIf you would like to make a comment about any matter related to the Association, your own experiences with a heart child or comments about our website, you may do so in this Guestbook. Note: Latest entry is now at the bottom of the last page.
Page: < 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
17 18 19 20 21 22 23 24 25 26 27 28 29 >
Vicky Kernot, Rushden,Northants, England
Sent: 2002-12-13 at 11:11:37 GMT
My daughter is 3 months old she had an opperation for a coarctation at 2weeks old which in its self was a complete shock as i knew nothing through my pregnancy.
She also has complete avsd which should be sorted in the new year depending on her weight gain. She is still only 9 pounds which is very scary as she needs her op desperately but won't gain weight!! I would love to hear from any one who knows what this emotional roller coaster is like, as talking to other parents in similar situations actually makes you feel normal again!!
Click here to contact 'Vicky Kernot'.
Louise McMillan, St Helens, England
Sent: 2003-01-24 at 20:09:46 GMT
I was born with a coarctation of the aorta, but I also have High Blood Pressure and Fine motor co-ordination problems due to Brain Damage. If u want to contact me feel free to do so.
Click here to contact 'Louise McMillan'.
susan franceschi, nortvhille, MI 48167, usa
Sent: 2003-02-10 at 20:34:17 GMT
would like to know about groups or email contact for my son age 10, to meet or talk with others with pacemakers. As A parent would like to correspond with other parents of children with Arterial switches and / or pacemakers. Thank You
Click here to contact 'susan franceschi'.
Miss Laura Dempster, Lockerbie, Dumfriesshire
Sent: 2003-02-21 at 19:42:55 GMT
My son Caleb was born on 13th August 1999 seven weeks premature at Yorkhill Hospital. Caleb had a major congenital heart disorder consisting of small left ventricle, ventricular septal defect, mitral atresia and a double outlet right ventricle. He had a balloon an hour after he was born and then a pulmonary banding when he was three weeks old and while he was in intensive care recovering from operation the doctors found that his patent ductus arterosis opened up and needed to go back down for more surgery.
Caleb came through it all and spent a long time with a nasal gastric tube and also had persistent chest infections.
Last year I started to notice changes in Caleb like oedema, sickness, lethargy and generally not behaving like the little rascal he really was. I made constant visits to my G.Ps and also his hospital and they kept saying it was chest infections.
Eventually Caleb was admitted to hospital on 3rd May and had various tests and found out the doctors could not perform corrective surgery on Caleb and only viable option was heart transplantation to be performed at the Freemans Hospital in Newcastle.
Unfortunately Caleb never got the chance to go there as he died three times and doctors brought him back.
Caleb was very brave he died for twenty seven minutes and he still did not give up. Caleb died on 11th May 2002.
This is the first time I have read or looked up or had any association since Caleb died.
My world has been destroyed, I miss and cry for him all the time and wish he was still here. Caleb was a courageous, joyous and loveable boy and having him for a few years is worth all the pain that I will have till the day I die.
Click here to contact 'Miss Laura Dempster'.
jody, united states
Sent: 2003-02-26 at 19:03:43 GMT
I am 7 months pregnant due in May. the baby has a enlarged left ventricle that does not contract. Drs. say they can do the fontan surgery, but outcome is unknown at this time. If anybody has dealt with heart defects e-mail me and we can talk.
Click here to contact 'jody'.
amanda mayson, wigan, lancashire, england
Sent: 2003-02-27 at 12:12:33 GMT
hi my name is mandy i have two sons who have aortic stenosis my eldest son who is nearly 9 was diagnosed at birth and had ballon dialation at 7 days then four more since that he now is awaiting a date to have the ross procedure which is a valve replacement. he also has a leak which is getting worse every day. my youngest son who is nearly 7 was only diagnosed at 3 years old by accident on a rountine examination. he also has had many dialations and also has a leak. it makes them both very lethargic most of the time. what i cannot get an answer to is how both of my children have exactly the same. we have tried to find out but we just hit a brick wall life is hard but we cope on a day to day basis. my family give me a lot of support and help out whenever they can. the worst thing for me is saying no to my children when they want to do things that the other children are doing. my eldest son thomas would love to go outside and play football but its not possible at the moment. maybe one day.
Click here to contact 'amanda mayson'.
JACKIE AND ALLAN, warrington, england
Sent: 2003-03-13 at 21:59:39 GMT
our son conor had transposition of the greater arteries when he was 13 days old, we knew nothing about it until a day after birth.the staff and families at alder hey are second to none, we couldnt have got through it without them.It encouraged me to become a paediatric nurse and i have recently completed my finals and am awaiting my a job at alder hey. We found the support from the staff very valuable and the surgeon mr pozzi is like a god in our house. if anyone wants to chat about their experiences of the condition please contact us both on the web, well done for an excellent web site.
Click here to contact 'JACKIE AND ALLAN'.
Jonathan Getty, Belfast, Ireland
Sent: 2003-04-20 at 09:04:21 GMT
Homepage : http://mysite.freeserve.com/Mexico_Child_Link/index.jhtml
Keep up the good work. Have a look at our project for abandoned children in Mexico if you have the time.
Click here to contact 'Jonathan Getty'.
17 18 19 20 21 22 23 24 25 26 27 28 29 >
Where the poster has left an email address, a 'Contact' link will appear.
Please use this if you wish to get in touch with the poster.