What do we need in the UK?
25/02/09
For those of us in the UK our hospitals have a particular challenge as they see relatively few cases of Ebstein’s compared with the US. To make this worse, cases of Ebstein’s divided geographically over a number of hospitals rather than having one or two hospitals of excellence. This means that because Ebstein’s is rare, surgeons may peform very few operations, so knowledge and expertise is slower to build than somewhere like the Mayo clinic.
In addition, techniques such as the innovative cone surgical intervention, as far as I know are not available in the UK as yet. Funding is short because the condition affect so few people (relatively), and we have not yet had a UK study to actually clarify how many people have been diganosed with this condition. One aim of this site is to increase the level of expertise in this condition, through fundraising activity and donations.
Please post your comments about Ebstein’s in the UK. I for one would like to know that if my child needs it, then she will get the most up-to-date surgery that is available, and we need to find a way of bringing this to the UK.
Caroline
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Do you know how the conference went? It’d be interesting to see some feedback from it!
Amanda
Comment by Amanda — July 31, 2009 @ 8:35 am
The conference I believe went well, according to the organisers but I do not know anyone who attended.
As a update, our charity barn dance raised £1600. With this we are sending a suregeon from Bristol childrens hospital to Brazil to learn the cone technique from Dr da Silva, so we will then have that expertise in the UK. Hopefully then he can teach it to others. We are very pleased with this important pogression.
Caroline
Comment by caroline — July 31, 2009 @ 10:59 am
Hi Caroline,
I am from the US. I wish I could help with doctors in the UK; however, I know that there is only ONE surgeon (Dr. Christopher Knott-Craig) in the world that has perfected Ebsteins in infants. I know he is training other doctors as well. He is in Memphis, TN (US) and the other is Dr. Gary Danielson. He was the developer of the Ebstein’s surgery but only does it in older children and adults. He is also in the US. I would be more than happy to make some calls from the states to help you. Dr. Knott-Craig is originally from South Africa and does surgeries and lectures all around the world.
Comment by staimpeld — August 27, 2009 @ 4:39 am
Hi there
Thank you for you conments. At the moment we have quite an exciting development as through this site and our charity barn dance we have raised enough to send a surgeon out from Bristol children’s hospital to watch Dr da Silva in Brazil (the inventor of the cone technique) perform some of this innovative surgery.
This means that the UK will now have this skill (even if only 1 person to start with). I am very pleased that our organisation has been able to help with this. However, raising awareness is what it is all about. I may well come back to you regarding your kind offer, thanks.
Caroline
Comment by caroline — August 27, 2009 @ 8:16 am
I am so pleased to find this site.. Ebsteins is indeed an unknown entity in the UK. I would be interested in helping raise awareness, it is so desperately needed. Our Daughter had Ebsteins which remained undetected, We will forever have unanswered questions, endless What Ifs? Things may of been so different for our Family, If only someone had known. All the Doctors we dealt with didnt even know what it was. I would like to help remove the ignorance surrounding Ebsteins, in hope that everyone affected by it in the UK may receive the care they deserve.
Tasha
Comment by Tasha — September 25, 2009 @ 12:58 pm
Hi my daughter was diagnosed with ebsteins at birth and after 6 years of hospitalisation in and out in and out. We found a french surgeon who came to England and who turned a child with sats of 33 to a lovely pink child of sats 98 the techniques are out there you have to find them. Unfortunately even though the ebsteins was corrected her ventricles due to six years of hard work were shot and she had to have a transplant. It was the best thing that ever happened. My ex ebsteins daughter has now turned into transplant daughter. Dont listen to the medics who just give a gloomy they dont respond to surgery approach. My daughter would laugh at them all who gave her 2 to 3 days at birth she was very severe. She would laugh as she runs and horse rides pass them and probably say its a piece of cake. Get positive and get researching all you can. thanks
Comment by jeanna — October 6, 2009 @ 10:47 am
Hi. I just wanted to add a short note of hope for some of the people on the site here. I am 34, living just north of London, and I was diagnosed with EA just after I was born. I was sent to Great Ormond Street Hospital where I was looked after by my consultant (Prof John Deanfield). He and his team have looked after me brilliantly all my life. My case is only mild, so i am fortunate, and in fact I only recently had to have an ASD closure – which was performed via key hole and only meant 2 nights in hospital. I live life to the full, and it doesnt stop me doing anything – the doctors are always very pleased.
I just wanted to explain that we have some of the finest cardiac specialists in the world based right here in the UK, and if anyone needs support or advice, then please contact the Heart Hospital in London as they are fantastic.
Comment by Alex Stones — October 25, 2009 @ 6:05 pm
Hi, my son was born in 2007, and was diagnosed with ebsteins, a couple of hrs after birth, he was taken to a childrens hospital, which had intensive care beds. However, I felt the whole time he was there nobody seemed to have any answers, and whenever I brought up the question about surgery, I was told no surgen would touch him. I know he had a servere form of ebsteins, and svt, and cyanosis he survived for only for two weeks, and now two years later I am still yet to find any information regarding treatment of infants with ebsteins in the uk. I have resigned myself with the opinion that the uk compared to usa, might as well still be in the dark ages. I feel totally let down, and must admit before all this I had no idea just how behind the uk was in this subject. I now have another son, who thank God is healthy, and when I was pregnant with him, was offered a fetal echo. I asked the featal cardiologist in manchester, how often he had come across this type of condition and was told he had seen 7 in 1 year, that to me does not seem that rare that treatment is so limited.
Many thanks
Comment by kath — November 9, 2009 @ 10:00 pm
hi, my youngest daughter was diagnosed with ebsteins when she was a few months old. She went for a scan for a heart murmmer and it was descoverd that is was ebsteins. The consultant at yorkhill hospital is amazing. We were told it was only a mild case so they would just moniter her every year. We went yesterday for our check up, she is 3 now, and we were told it has got a lot worse and have to go for a mri scan under anistetic. Dr richens is a great dr and seams to know what he is talking about he has put us to easy and tryed to inform us as much as he can but we still feel that there is no real information about it or any help how we should care for her or help her. I just wish that we knew what the future holds for our angel and the light of our life.
Comment by laura — November 27, 2009 @ 9:28 pm
Dear Caroline,
We had a meeting with Dr Khambadkone at Great Ormond Street Hospital in July for our baby daughter and he mentionned the cone procedure and that they could do it there. He seemed completely up to speed with Ebstein’s.
We are very lucky that we can compare doctors and procedures on an international scale as I am French and my husband is British but our daughter was born in Poland (my husband has been sent here by his company for 3-5 years). We are delighted in the way the Polish and British cardiologists have worked together in total transparency to provide the best care for our daughter.
Professor Werner (here in Warsaw) has seen about 50 cases in her 30-year career and Dr K and his team at GOSH sees about 1 or 2 cases every year.
Wishing you and your family well from snowy Warsaw.
Kind regards
Celine
Comment by Celine — November 28, 2010 @ 10:02 am
we live in the uk and my daughter is now 12 she was diagnosed with ea when she was born and had four procedures in one operation when she was seven the main one been a glens procedure.
She is now starting to decline again but is noticing these things herself.
Her question to me today was am I going to die? She knows in the not so distant future she will have more operations and as a family we have coped by ourselves since the day she was born. It is hard for us all to watch her and not to be able to answer all her questions.
Sometimes even the doctors look at you as if you are mad when you mention her condition more awareness in this country would be good for everyone.
Comment by Debbie — March 13, 2011 @ 3:37 pm
Hello Debbie
I am sorry that your comment is noticeably down beat, I only hope we can answer some of your questions here in the forum, and also there is a lot of information on the site. Are you able to let me know which area of the UK you are in and which hospital are you under?
Caroline
Comment by caroline — March 13, 2011 @ 10:56 pm
I live in the UK. Our darling daughter was born in 1996. A routine check-up by the Doctor on her 3rd day revealed she had a heart murmur. We were whisked to another hospital where her tiny body underwent an ECG, but left me with no information, other than the murmur would probably go away within 6 months. Sadly, it didn’t. She was monitored regularly, and thank God continued to develop well. It wasn’t until she was 3 that they said she had a hole in the heart and had EA. I had never heard of it and was quite scared to carry out any research. At the time the hospital she was being monitored at and would have had any surgery had they said she required it, was the same hospital that was receiving international condemnation for its handling for heart patients (Bristol). So it was a very challenging time.
My darling daughter is now nearly 15. We took her for her usual appoitnment with her consultant yesterday who said her sats were down, she was blue (although no outward appearances). She had a chest xray and ECG results of which the Doctor would analyse later and get back to us. He told us because she was experiencing palpitations, he would arrange for her to have an MRI scan, an exercise tolerance test where they would measure her oxygen levels, a procedure to look at the back of her heart.
It’s always been a case of when rather than if she has surgery and now she is considered to be fully developed, the time is edging near, although no timescale has been given.
I realise we have to be strong for her and arm ourselves with information to make informed choices on her behalf, but it is so overwhelming. I want her to have the best care, the best treatment and by the grace of God, the best chance, but as people have already mentioned here, so little is known about it in the UK and our surgeons appear to have very little experience in this field. I don’t want my darling daughter to be a guinea pig for some surgeon to practice on to get some more experience. I want her to be operated on by the person most capable of carrying out the required procedure(s) and the rest will be up to God almighty.
My prayers and best wishes to all of you who are also going through this journey – may God protect and keep your loved ones safe and well and healthy.
Comment by Mina — March 25, 2011 @ 3:33 pm
hi, hoping someone can assist me. We are relocating to the UK from South Africa later this year and i just need some reassurance that my kids will be in good hands with the NHS as i know relatively little about the NHS. I have one child with mild Ebstein’s and another with a heart problem that has already been operated on. I am most concerned about my Ebstein’s child – will the NHS provide good care for him? Will i be able to have regular check up’s with the pediatric cardiologist? If an operation is needed at a later stage, which hospitals in the UK are the best with regards to heart operation on children? If an operation is needed and the UK hospitals are not equipped to offer it there, and w ehave to travel to Mayo for example would the NHS cover that cost to operate outside the UK? Apologies for all the questions, but i don’t knwo who can clarify these points for me. No one seems to want to discuss the NHS at all,
Tanli
Comment by Tanli — January 10, 2012 @ 5:57 pm
Hello Tanli
Certainly your child will be able to see a paediatric cardiologist on a regular basis in the UK. The hospitals who will carry out such surgery are currently being reduced in order that we can gain more experience and expertise in surgical procedures amongst what is a relatively small operation. Certain hospitals such as Bristol Childrens Hospital are engaged in doing a small number of cone repairs at present following a visit from Dr Jose Pedro da Silva from Brazil, It is hoped that such procesures will be practiced more widely in the future.
I do not categorically know for sure, but I think it is unlikely that the NHS will fund a procedure in the Mayo clinic.
Perhaps you could let us know out of interest what the care and options are in South Africa?
Caroline
Comment by caroline — January 10, 2012 @ 10:33 pm
I forgot to say Tanli feel free to get in contact when you arrive in the UK. Also, we are always looking for volunteers to help develop Ebstein’s society if you feel like making a difference!
Caroline
Comment by caroline — January 10, 2012 @ 10:36 pm
My son is 12 years old and was diagnosed with Ebstein’s Anomaly at birth. We have been told he will need an operation at some stage. At his last appointment we were told that he will soon need a pacemaker.We are wondering if we should get a second opinion and whether you have any experience of obtaining a second opinion.
Margaret
Comment by Margaret — January 18, 2012 @ 8:44 pm