rupture of SynerGraft

[Elisabeth]

Hi!
I am Elisabeth from Vienna, Austria. Please forgive me, that my English is not perfect.
My son Arnold was born in 1994 with truncus arteriosus communis. He had his first operation 1994. One year later he got a new heartvalve (homograft). In November 2001 this homograft had to be changed. He got a SynerGraft. On the 8 th day after his operation he died because of a rupture of the new Synergraft!!
I don´t want to fear you, but it seems that there is an enormous risk in that new material.
Has anyone else heard about any complication?

Greatings from Europe

Elisabeth

[Nancy]

Dear Elisabeth-

I don't know much about the Synergraft valve, only what I've read here. But I do want to welcome you to this site and tell you how very sorry I am that you have suffered the loss of your son.

My thoughts and feelings are with you. God Bless.

[Christina]

Hello Elisabeth,

Welcome to this wonderful site. You will get the support that you are looking for. There are many great and knowledgeable people here.
My thoughts are with you in your great sorrow, and I am so sorry you lost your little son.
I don't know anything about the "Synergraft", and can't help you with additional information, but I am sure someone will come along soon who is able to give you the help that you need.
There always are risks involved with any surgeries and there is no guarantee. We always hope and pray for things to go well, but sometimes things go terribly wrong.


Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

[hensylee]

Hello Elisabeth - my sincere condolences on the loss of your son. Your grief must be unbearable - none of us are supposed to lose a child. He will forever be a part of your own heart.

I, too don't know of this that you speak of, but Dr Rich on about.com (heart disease/cardiology) can probably give you some information if you don't find it here. He is an electrophysiologist cardiologist, lecturer, author, teacher, attends many medical seminars and seems to be informed abut everything current in the heart field.

Your English is very good. Welcome to the USA, although many of us are from other countries, as well. God bless and keep you

:)

[sylviayasgur]

hi elisabeth,
i am so very sorry for your loss. it must be one of the most difficult things in life to lose a child. hensylee is right, it's not supposed to be that way. this is a very supportive site and i'm sure as you visit there will be others who will come forward with more info and support.
i do know that there are several members on this site who have cryolife synergrafts. i'm also sure this is frightening for them to read. someone will surely have more answers for you soon. just keep checking back.
although i realize that it is no consolation to you, any surgery has it's risks and as we all tell each other here on this site, there is no right or wrong valve or way to go.
i am truly sorry for the pain you must be suffering. please come back and visit with us again.
-sylvia

[Elisabeth]

Hi!

I want to thank you for the friendly wellcome.
Yes, it was very hard for us, to loose oure little son. But on the other side we are thankfull, that we were allowed to spend 7 wonderfull years together. Our love to each other and our love to Arnold helped us to get through this terrible last weeks.
Yesterday we were told, that they don´t use SynerGrafts in Vienna any more because the results have been to bad.

greetings

Elisabeth

[Billy]

Hi Elisabeth

My heart goes out to you today on the recent sad events in your life. I too lost a loved one through valve replacement surgery. My wife Myrtle aged 44 years, died 10 weeks after having a mitral valve replaced in 1998.

Any death is a tragic event but to lose a child must be even worse than someone who has at least had some opportunity to live their life and in Myrtle's case to produce three healthy sons.

In the weeks and months ahead, you will search for reasons and answers and there will be times when these will be very difficult to find. I have been through this process for well over three years now and have realised on many occasions how cruel the world can be.

If I can help at any time to be of comfort or support, please do not hesitate to contact me. My e-mail address is:

billymccombe@aol.com

May God be with you as you grieve for your little son and start to re-build your life and your future.

[LUVMyBirman]

Welcome

Please know that your family will be in our prayers. How difficult this must be for you and yours. Blessed to have your son in your life, short but very sweet. May each day continue to get better. Hoping you find all of the answers so you can receive closure.

I don't know too much about that particular valve other than reading a brief article. It is my understanding that it is not available in the US. Still in trails? I may be wrong.

Overseas you are usually a step ahead. We have found here that just because a new product is approved by the FDA....does not necessarily mean a lot until it is out there and being used regularly. If a concern is going to surface..... you would think they would catch it in trials. Not always so. Unfortunatley that will not change the outcome at hand. But, it will unable you to help others through your experience.

This is a wonderful group. Happy to help. Keep us posted.
Here is a link that may be helpful
http://www.cryolife.com/research.htm

[srwieland]

Hi Elizabeth,

I am so happy to welcome you to our site. Having lived in Europe for many years, I am always keen to hear European perspectives on this site.

However, I am of course so sorry to hear of your loss of your son Arnold. I have a 7 year-old daughter and cannot imagine such a loss.

Most stories about valve replacement that we hear on this site end well, but your story reminds us how serious and risky open heart surgery is. We all fear what you have experienced, and take strength from your courage to share your story with us so that we will never forget how careful we must be and ultimately how much we need to pray for each other. God bless you and your son.

So far, I am a 9-month survivor with a CryoValve-SynerGraft valve. I was the first and only one of two that I know of on this site who have received such a valve. The other is Mara. I haven't been following the site much in the last few months, though, so maybe there are others by now.

In any case, I would be very interested to know what your son's doctors attribute your son's horrible setback to. Was it structural failure of the valve, some other problem with the valve, or something to do with the surgery? I don't want to cause you any more grief, so if you don't want to get into this sort of discussion, I certainly understand. But, if you wish, I'm sure that those of us who've received the same valve as well as others who might consider it would greatly appreciate more details about this sad case.

Again, thank you very much Elizabeth for your courage in sharing your experience and this information with us. We are very grateful to have you join this very helpful group on this website.

God bless you,

Steve in Florida

[Elisabeth]

Hi Steve!

Of course I want to answer your questions, otherwise I wouln´t take part in this forum. It´s a bit difficult for me to do so in English, but I´ll try to do my best.
The doctors told me that the real reason of the rupture is unknown, but it defintitly was not a problem within the surgery. They just found ot that there must have been an inflammation on that part of the Graft.
Arnold felt well that day, he walked around and he ate with great appetite. It happened while he was sleeping. He didn´t have fever and his blood was controlled that day. Everything seemed to be allright.
He was the third child in Vienna, that got such a SynerGraft valve. And one of the others also died. In that case the reason was an enormous stenosis and they couldn´t help him anymore. But first they thought, that it didn´t happen because of the new material but because of some other reasons.
A fourth child got a SynerGraft a few days after Arnold´s surgery. They changed his valve again after that had happened with Arnold, because they didn´t want to risk it again. And now they don´t use it anymore. They didn´t hear anything about complications in other countries.
I hope for you, that it was a singular malproduction and there won´t be any other complications.
If they´ll find out anything new, I´ll tell you

Best wishes

[Gerry]

Servus Elisabeth and welcome

I had AVR this time last year and I did a lot of research before choosing to have a Homograft - not because I felt it was the best, but because I felt it was the "best for me".

During my research I found out that it is very difficult to re-operate to replace a Homograft and when it is done, it is usually replaced with a mechanical valve.

Also, you realise that Synergrafts are in the world of "experimental" in the hope that these may become the valve of the future. Unfortunately, any new product needs time and volunteer patients before it can be perfected and proven. The mainstream valves of today are based on years of technological improvements and failures from which much has been learnt in the past.

I am very sorry to hear about what happened to your little boy - it was tragic. I hope that something good may have come out of your experience and that the doctors have learnt something so that future patients may benefit. In that sense, your little boy did not die in vein.

My thoughts are with you.

Gerry

PS : Both my parents were born and grew up in Vienna

[Elisabeth]

Hi Gerry,

nice to hear something from "the other end of the world".

I was told, that if someone gets his second homograft, the degeneration will be faster because your body has learned how to fight against it. Nevertheless the doctors always told me that they would take a homograft again, because "we don´t have anything better". But it was Arnold´s third surgery and we knew that he would need a new homograft in a few years again.Everybody hoped that the Synergraft would grow with the child. So they tried it and it ended with a tragedy for us.

Greetings from Austria to Australia

[baw]

Saw this today on www.bigcharts.com:

"CryoLife still halted after news of SEC probe (CRY) by Michael Baron
CryoLife (CRY) is providing further detail on its investigation by the Securities and Exchange Commission, which relates to circumstances developing from the Food and Drug Administration's recall of all the human tissue processed by CryoLife for human transplantation since October. The company said the SEC has requested information on its operations in the post-September 1, 2001 period. The company said the SEC's request includes information regarding accounting for the possible recall of the tissue and trading in CryoLife securities. Steven Anderson, the company's president and CEO, is cooperating fully with the investigation. Trading in the stock is halted."

I don't know if this means there is potential liability on the part of Cryolife in connection with your son's tragic death, but if you are up to it you might want to contact an attorney.

[Stevo]

I'm sorry to hear about your son- I can't begin to imagine what it must be like.

I heard that SynerGraft were having problems, but it seems strange to me that these complications should arise in a valve that combines the low blood damage effects of a gluteraldehyde valve with the lack of rejection of a mechanical valve. No anaemia, no anticoagulants, no wear effects/ infection fenestrating the leaflets.

The prospect of having a valve depopulated of antigenic cells to act as a scaffold for the patients own tissue is an amazing thing. Given invasive growth, the valve can be thought of as the patients own tissue within a relatively short time span, meaning there will be no problems with rejection and loss of patency.

Anyway, sorry again. Seems like someone like me in Atlanta still has a long way to go. This valve will be worth it though, although it may put me out of a job!!!

Regards,
Steve

[joy]

Hi Elisabeth, and welcome to this wonderful site! I like all the others would like to tell you how sorry I am that your son passed at such a young age. I know it must feel horrible.

When I had my surgery, I was told by my surgeon that he would not do the homograft at all, and that they don't do them at all in the hospital I had my surgery in. He said they ae too hard to put in and they are just experimental right now. They put a C.E. Bovine pericardial valve in my heart. I had an MVR on august 27th of 2001. If there is anything I can do for you, feel free to E-mail me at kjipaulson@yahoo.com. there are like 5-6 people on this site that have had homografts put in.

I will put you in my prayers, and just remember that your son is in heaven, and will not have to have any more surgeries again.

[mommywri]

Dear Elizabeth,
I was so sorry to hear about the death of you son. How courageous of you to share your story with us so that others might benefit from your loss.
My daughter Christina (now 13) was also born with Truncus Arteriosus and had open heart surgery at one month and 7 years to replace the pulmonary conduit. Because she has had endocarditis twice (at 2 1/2 years and 9 years) we are researching the Synergraft valves because her truncal valve (aortic valve) has severe regurgitation and must be replaced soon. Your story really brought home to me the risks faced by these very special children. Sometimes there really are no easy choices. But I do thank you for sharing your story with us.

Martha