So where are you from? How old is yo... - Down's Syndrome S...
So where are you from? How old is your child/grandchild/sibling etc?What experience have you had with heart surgery etc?
I'm Penny from the UK and I am a bereaved parent,
My second son was born in 1989 with DS, AVSD, a secundum ASD and PDA. He also had Hirschsprungs, had a colostomy op at 4 days and palliative heart surgery at 10 weeks but arrested 4 weeks later.
I've been involved with Down's Heart Group since shortly after he was born, when the Group was in it's very early days and I am a firm believer in sharing information and experiences to help and support others. We can all feel very alone at the beginning of our journey, but no-one needs to if we can get the word out that groups like this exist - it's a much less frightening experience if you know that there are others out there who understand what you are going through and how you feel.
I am an advocate for people with Down's Syndrome and have the honour of having some wonderful friends all around the world. I believe that with improved awareness, we can show that people with Down's Syndrome are more like us than different and that they deserve to be respected and given the opportunities that the rest of us often take for granted.
I also feel that there should be a requirement of all medical professionals involved in ante-natal diagnosis to ensure that expectant parents are given up to date, factual, accurate and unbiased information to assist them in making decisions about whether to continue a pregnancy. There should be no pressure on them to make a quick decision, nor should there be any suggestion or expectation of what that decision should be. Only when this happens can a family make a truly INFORMED choice.
Danny
43
none
Well I know who this is!
You should have told us about his life without having had surgery, cos it's a story that gives to hope to anyone whose youngster can't have surgery for some reason. Apart from which he's such a character you need to share!
I'm Nicola from Scotland. Mum to a gorgeous DS daughter.
My daughter was born in 2005. We didn't have any tests as we knew we would deal with whatever happened. We were told she had DS an hour after she was born. She had an AVSD and was rushed to Glasgow from our local hospital just hours after birth. The professionals thought she might not survive the journey, but she did. She had a repair at 5 months where she was given a 1:4 chance of surviving surgery, but she was out of intensive care within 5 days and home in a week and a half!
My daughter continues to surprise us all - she has a split placement at the local primary (support centre am and mainstream pm), is reading, learning numbers and is always surrounded by a crowd of friends out in the playground.
I am a very proud mum.
Hi I am mum two four children with downs syndrome,three young adults and a four year.one had ads repaired at fourteen months,one had no heart problems,one had small vsd left untreated is fine but had wolf Parkinson's white at seventeen,our youngest had several vsd's,PDA pulmonary hypertension and lung problems. We are inleicester Derbyshire borders.
Hi I am a mom to 4 children, my youngest daughter has DS she ws born with a hypoplastic aortic arch with coratation of the aorta and a complete AVSD. Her first surgery took place just when she was 3 weeks old this was to repair the hypoplastic aortic arch and fIt a PA band. In October 2011 the PA band had slipped to the right brach of the pulmonary artery so drs did a cardiac catheter to see how bad things were. From having the catheter done her health got bad she had 4 major chest infections each one effecting her more in March this year she was due to finally have her 2nd heart surgery but 3 days before her operation she ended up in intensive care and collapsed her left lung she stayed there for 5 days 4 of which she was ventilated, then went to a ward for 3 days only to collapse her lung yet again and this time she rquired ventilation for 11days back up to a ward for 4 days before her complete repair finally took place 4 weeks today. A week after surgery she developed SVT so is now on beta blockers. Since going home after surgery she developed another chest infection but at least this time her sats are so much better although the drs have her on oxygen the lowest hrer sats are falliing to now are 83% but before surgery we were lucky if her sats were 83%
Forgot to say that we live in Birmingham in the West Midlands
Oh and Sinead is now 14months old she was born in march 2011
I am mum to one little girl with DS. She will be 3 next month. We live in Leicester. She was born with complete AVSD and had her first surgery at 6 weeks old. She then needed more surgery at 10 months to try and repair her mitral valve, unfortunately when they operated the mitral valve disintegrated so she had to have a mechanical valve inserted. This means that she is now on warfarin and will require more operations to replace the valve as she grows. The next op is due in the next 18 months. She also had some respiratory problems including an area of right upper lobe collapse. For the first year she required oxygen while she slept but is now off this despite suspected sleep apnoea! Oh and just because she felt that she didn't have enough issues she developed a rare blood clotting disorder as a result of her MMR vaccination! She also has a visual impairment. Despite all this she's doing brilliantly and has just started to walk (holding one hand for support).
Hi mummycat was wondering how long it took the drs to decided that ur little one needed oxygen at night when she slept. For the last 6months Sinead has had lots of chest infections. The latest one at the moment she was amitted to hospital due to having low sats tachypeoa left lower lobe consollidation and collapse, she was in hospital till yesterday as she was requiring a tiny amount of oxygen mainly when she slept. They have said to monitor her sats at night when sleeping for now to see if there is a pattern to her dips in sats. Sinead has had her complete repair a month ago and has had sats of 95% and above but since this last chest infectiion they have obviously been lower. I am due to go back to see the cardiologists on the 1st of June should I mention this ?
Lily didn't leave hospital til she was 4 months old, she had her avsd repaired at 6 weeks and the majority of the time after that was to try and sort out the oxygen. She came off the oxygen after her second surgery when her sats were averaging about 95. She still has regular overnight sats checks. Her heart function is beginning to deteriorate again now, as expected as her next surgery is due in the next 18 months which means that her sats are now a bit lower. They haven't advised oxygen again yet but I think if she starts to dip below 90 it's a possibility. Lily's are always lower when she gets a chest infection too. I would always mention anything you're worried about at your appointment. I have been known to take a long list of questions etc to appointments so that I don't forget anything! Lily is also now taking prophylactic antibiotics as she had repeated tonsillitis and upper respiratory tract infections. They have helped a lot.
Hope that helps!
Sinead is on prophylctic antibiotics for the motility of her stomach as she vomits at least 4 times a week on a good week and sometime 3 times a day at bad times. The genral peads dr asked how. Many times Sinead has ended up in PICU in the last 6months due to her chest as they looking into providing home suction to try and pevent repeat chest infections. Last night her montior was alarming on and off all night but feel that even if she didn't have a chest infection then she probably would dip.
Thanks for your help xx
I am Mum to six children, two girls then four boys, ranging in age from nearly 14 to two in their 40's!! Nicky is my 5th child, He was born on 8th August, 1987 with a complete AVSD which has not been corrected. He also has numerous and complex other medical problems including Eisenmenger Syndrome, Arterial Pulmonary Hypertension and chronic lung disease, he is completely tube fed via a gastrostomy, he also has an oesophogostomy. At birth we were told he would not live to be 2 but he proved everyone wrong. He is one of the less able youngsters with DS but we all love him to bits. He is under the care of the Royal Brompton Hospital in London. Last year my first grand-daughter (not DS) was born with truncus arteriosis and sadly died after her second open heart surgery at the age of 17 days. My youngest son has autism and severe learning disabilities, Nicky also has autistic traits.
I'm mum to three children, two step-daughters, and a step-granny to one.
My youngest is just coming up to 7years old and has DS.
She was born with a AVSD and a VSD, had open heart at Great Ormond Street at 13 weeks. Both lungs collapsed after surgery (thankfully one after the other!), but she was home within a week. Unfortunately the failure to thrive and cardiac failure meant several trips back into hospital before the surgery but she's been fine since. She was tube fed until over 3 years old but boy is she making up for it now - she can hear a crisp packet rustle from the next room!
She has recently been diagnosed with severe scoliosis so now wears a back brace for 23 hours a day, and will do so for the next 10-12 years apparently. But like everything else that's thrown at her, she takes it on board, deals with it and keeps smiling.
She attends mainstream school and is just about to move into year 3. She loves school but loves making friends more I think. She's definitely there just for the social side of things.
hi im from surrey my son was born in 2002 with ds he also had a full avsd which he had repaired at 6 months old and he stunned his surgeon as he was only on bypass for 90 mins in picu for 2 days on the ward for 3 before transferred back to our local hospital in total he was in for 7-8 days bofore he was allowed home.
He is such a delight to have not only loving but he is such a comical character we never have a dull day with
Claire was born in Glasgow in 1989 with DS and an AV canal defect. She was operated on at 9 months old weighing just 9lbs and despite a few scares early on - blue light ambulance into hospital and placed in an oxygen tent - she has remained very healthy, has loads of energy and loves life. The repair has now lasted nearly 23 years and we are very grateful for all that the cardiac team did at Yorkhill.
Hi. I'm mum to Laura, born in 1987. The Downs was diagnosed on day three, and the rollercoaster began. We went through the various tests, and ended up in Great Ormond Street with Laura aged 9 months for her AVSD to be repaired. They didn't pick up on the tests that her right ventricle wasn't open enough, so she had a PA band instead to give her time. Five weeks in ICU followed due to a leak from the by-pass site, and bruised diaphragm not keen to work.
At three and a half, Laura developed pneumonia, with sats as low as 59. The GOSH team took this as a sign she might be outgrowing the PA band, and further tests suggested she might be ready for a further attempt at a correction. This was done successfully at aged four and a half, leaving her with a small leak.
She has been on no meds for her heart, other than a few months post-op. She went through the local SEN school, and on to the MENCAP college in Northumberland, and now lives in a two bed flat within a "care home". She has had two appointments so far having transferred to adult services, via the Heart Hospital in London, and continues to do well.
Isn't it great to see the range of ages and how well they are doing, even those who are now in their 20's and beyond. It gives me great hope for all our youngsters in the future.
Thank you all for sharing, I hope more people join us and share their knowledge and experiences. Together we have a great deal to share to benefit our community globally.