5 year old to undergo Ross Procedure

[Eln1559]

My son has was born with aortic stenosis with a bi-cuspid aortic valve. He was functioning normal until last year. He had his first OHS in May if this year. The surgeon was confident we could fix it instead of replacing it. My son did excellent no problems at all was out in 5 days. Recently he has been getting more tired and sweating a lot so we took him back in and the fix just really didn't fix. So here we are not even a year later being told we have to do the Ross Procedure.

I'm the type where doing research helps me cope so if anyone has experience with a child this young and how they did and are doing it would be great. Thanks so much.

 

[Rebecca]

I tour this lab with little Slohn. As she grows she will need her fourth open heart surgery because her mechanical valve will not grow. First surgery was a hole in her heart and her second surgery was a repair and the repair did not work and her third surgery was a mechanical mitral valve. She had just turn two in this picture. http://www.northfulton.com/Articles...sub-Group-fighting-to-help-womens-hearts.html CorMatrix has two infants with their valve replace with their biomaterial valve. We saw an echo of the one infant’s valve. I think the infants live in other country. It was amazing to see what they are doing. I hope their valve is available in the USA when little Slohn needs surgery again. Dr. Robert G. Matheny is always open for questions. http://www.cormatrix.com/Newsroom-13

These stent are available in Europe and are now being used in trail studies in the USA. http://www.abbott.com/press-release...ical-trial-of-absorb-in-the-united-states.htm This is the future in medicine.

Video of Pediatric and Adult Congenital Heart Valve Surgery with Dr. Hyde Russell - http://www.heart-valve-surgery.com/videos/pediatic-heart-valve-surgery-hyde-russell-md.php

Congenital heart defect forum: https://www.inspire.com/groups/mended-hearts-heart-disease/topics/congenital-heart-defects/

Mended Little Hearts: http://mendedlittlehearts.org/

http://www.youtube.com/watch?v=o_FuroXqx7w This little boys has had heart surgery. http://www.cnn.com/2012/06/14/health/mini-vader/

Shawn White also had open heart surgery as an infant. http://snowboarding.about.com/od/professionalsnowboarding/p/shaunwhite.htm

 

[Agian]

I sent Cormatrix an email asking about developments in relation to their valves. No one responded.

 

[Eln1559]

Thank you. The more information the better. Would love to hear anyone's personal expierences.

 

[ski girl]

Eln - I have no experience with this, but I'm sending lots of good wishes your way from Australia!!

 

[Rebecca]

For emails to CorMatrix I would send them to Jill Brown at [email protected]. I called their office last summer asking if a group of us with heart disease could tour their lab. I was surprise when I received an email from Jill telling me that they were excited to show us their lab. The group that I arrange was the first group of patients to tour their lab.

CorMatrix provided us with lunch. Two people talk to us and show us the lab. They have large windows in the hall that you can see into the labs. Co-founder David Camp spent time talking to us about their company. David likes to talk. Co-founder Robert G. Matheny, MD, a cardiothoracic surgeon and co-inventor on several patents related to extracellular matrix (ECM) technology did a power point presentation. He started by showing us a slide of an acorn and talked about what the acorn needed to grow into a tree. He showed a slide of a hand that was severely burn and two other slides of the hand and with their technology the hand heal with no scaring and the finger again had finger prints. They have discovered how to turn off the switch that causes scaring.

The following evening I was at my girlfriend’s house and I find out that they had wanted her husband to come and work for them because is he a medical engineer and into medical sales. He also has a patent on one of the things use during a heart cat. Her husband told me that CorMatrix will revolutionize the way heart disease is treated. He also told me that there main thing that they were working on was heart valves.

My husband is in the blind study for the absorbable stent.
http://www.abbottvascular.com/int/absorb.html

 

[Agian]

Her husband told me that CorMatrix will revolutionize the way heart disease is treated. He also told me that there main thing that they were working on was heart valves.

I hope so Rebecca.

 

[Eln1559]

Eln - I have no experience with this, but I'm sending lots of good wishes your way from Australia!!

Thank you very much!

 

[Lynlw]

Hi Eln, Sorry to hear the repair didn last as long a you hoped, my 25 year old son has had quite a few surgeries since his first when he was 10 days old. I know how guting it can feel when more intervenions are needed MUCH sooner than hoped. Justin did not have a Ross, but there are a few parents at the online support groups at http://tchin.org/community/index.htm its an email lis, whos children had the Ross procedure.
That org CHIN,site has alot of really good info and references as well as a very large "Portrait gallery" w/ stories of children you can search by name, diagnosis, procedures etc. There are quite a few small "sub groups" for he list http://tchin.org/support/index.htm but PDheart is the main one everyone posts to and reads, the other groups I belong to there are slower.

FWIW I've read and listend to a few good studies and articles about the Ross in young children lately longer term.

Where is your son being followed and will be having his surgery? The Ross is definately one of the surgeries that how much experience the surgeons have in doing them on CHILDREN ofen the beter the results -short and long term. One good thing is many/ most? CHD surgeons at larger centers (in our experience anyway), are very good about giving 2nd opinions if you contact (call) them and send them copies of everything, including the actual CD of any recent ECHOs, MRIs cath etc. they ask for. Usually for no cost or if they do charge they only charge what insurance pays them, no cost to parents. There are a few CHD Centers in the US that are top rated, pretty much all over the Country, so that is good. I'm not sure which centers do many Ross's, I would probably contact their surgereon, just to see what they have to say. I always do, just if only so I wont second doubt my (our now that Jusin is a adult) decisions. I know off the top of my head, Spray at CHOP is quite well known for he Ross, but that might be because he is Justin's surgeon so I read alot of things he writes and listen to his wbcasts

If I can help w/ anything just ask. Justin didnt have any surgery at your sons age, so I cant help with that from personal experience , but tha email list has alot of parents wih "children" of every age, from Moms who are pregnant and their baby was diagnosed to oddler, grade school and even te Blessed group like us whose "babies" are now adults so can offer al kinds of advice, info

Good luck, I hope you can enjoy the Holidays and not think about this as much. I know that is easier said than done.
Lyn

 

[Eln1559]

Thank you. My sons surgery will be at the children's hospital in Minneapolis MN. His surgeon will be Dr. Francis Moga. He has done lots of Ross Procedures and I am very confident in him and his staff that helps a lot for sure. I will definitely check out that website and see if anyone there can give some stories of encouragement and hope as well.
I have done so much research already and the more the better. Thank so much.

 

[Lynlw]

Thank you. My sons surgery will be at the children's hospital in Minneapolis MN. His surgeon will be Dr. Francis Moga. He has done lots of Ross Procedures and I am very confident in him and his staff that helps a lot for sure. I will definitely check out that website and see if anyone there can give some stories of encouragement and hope as well.
I have done so much research already and the more the better. Thank so much.

Thats good he has a surgeon you have faith in, it helps to have peace with the decisions. Is it a far travel? I hear you about research, even when Justin seems to be doing well, Im always reading, incase we get blind sided and need to make choices sooner than we hoped so i try to stay up to date on the who and what ...

 

[Eln1559]

Thats good he has a surgeon you have faih in, it helps to have peace with the decions. Is it a far travel? I hear yo about research, even when Justin seems o be doing well, Im always reading, incse we gt blind sided and need o make choices sooner than we hoped so i try to stay up o dae on the wo andwhat ...

It is an 8 hour travel but would go cross country to follow his cardiologist and surgeon. We are fortunate enough to have a great family that helps with financials and helps take care of our 2 year old daughter.
Research for me always makes me feel better and that way I can know pretty much what the surgeons are talking about before during and after.

 

[Rebecca]

Below are a few more links that may be helpful. I am keeping your son in my prayers and sending Christmas blessings to you and your family.

Heart Heros Capes Give Hospitalized Kids Courage http://heartheroes.org/events/in-the-news

Miracle of Belief The Story of a Six-Year-Old Heart Hero by Sondra Dubas http://www.miracleofbelief.com/

 

[Lynlw]

It is an 8 hour travel but would go cross country to follow his cardiologist and surgeon. We are fortunate enough to have a great family that helps with financials and helps take care of our 2 year old daughter.
Research for me always makes me feel better and that way I can know pretty much what the surgeons are talking about before during and after.

First. sorry about my post, my "T" is dying on my keyboard and sometimes I forget to go back and put them in I know how you feel about travel, . We are lucky in living 15 min from CHOP which is usually ranked 1 or 2 in the Counry for CHD, but I've gotten opinions from all over and traveled about 6 hours to Boston just to get their opinions once when we were trying to decide where to have the next surgery, who had what trials going on that might help. I dont know if yuo found the site http://www.childrensheartfoundation.org/publications/its-my-heart it is an org that raises money for research, but they have a really great book on CHD w/ good pictures of the different CHDs and surgeries, they offer for free or maybe a small amount for CHD families. I used it alot when showing people what Jusitn had or needed done and used it with Justin alot when he asked questions about his heart. Justin is an only child, so we never had to think about other children.
Has your son been going there since birth? I'm curious is that the closet CHD center, I know in the middle of the Country there aren't as many as on the 2 coast.

 

[Eln1559]

First. sorry about my post, my "T" is dying on my keyboard and sometimes I forget to go back and put them in I know how you feel about travel, . We are lucky in living 15 min from CHOP which is usually ranked 1 or 2 in te Counry for CHD, but I've gotten opinions from all over and traveled about 6 hours to Boston just to get their opinions once when we were trying to decide whre to have thenext surgery, who had what trils going on that might help. I dont knowif yo found the site http://www.childrensheartfoundation.org/publications/its-my-heart it is an org hat raises money for research, but they have a really great book on CHD w/ good pictures of te different CHDs and surgeries, they offer fo free or maybe a small amount for CHD families. I used it alot when showing eople what Jusin had or needed done and used it with Justin alot when he asked questions about his heart. Justin is an only child, so we never had tto think about other children.
Has your son been going there since birth? I'm curious is that the closet CHD center, I know in the middle of he Country there aren't as many as on he 2 coast.

Thank you. I do have a book called Mattys Heart that I used to show my son what to expect. He had a better understanding after I showed him. It helped all of us really.
Yes that is the closest to us, but like any parent I would travel around the world in order to make sure he had the best care.
He has been going there since birth and his cardiologist really has a great way of explaining things and he is available literally anytime day or night. I have emailed him before on a Sunday at 11 pm and he responded in 15 minutes.
I will check out the book. Thanks again.

 

[Eln1559]

Below are a few more links that may be helpful. I am keeping your son in my prayers and sending Christmas blessings to you and your family.

Heart Heros Capes Give Hospitalized Kids Courage http://heartheroes.org/events/in-the-news

Miracle of Belief The Story of a Six-Year-Old Heart Hero by Sondra Dubas http://www.miracleofbelief.com/

Thank you very much.

 

[Lynlw]

Thank you. I do have a book called Mattys Heart that I used to show my son what to expect. He had a better understanding after I showed him. It helped all of us really.
Yes that is the closest to us, but like any parent I would travel around the world in order to make sure he had the best care.
He has been going there since birth and his cardiologist really has a great way of explaining things and he is available literally anytime day or night. I have emailed him before on a Sunday at 11 pm and he responded in 15 minutes.
I will check out the book. Thanks again.

If you like to do alot of research, have you checked the webast available from the different annual surgical societies meetings? Each session runs about 1/2 hour and they have all kinds of topics every year, that usually have the best up to date info on surgeries, trials etc. That is often where all the other doctors, get their info if they arent taking part. Even tho they are talking to other surgeons, for the most part its all pretty understandable, once you know the basics which pretty muc everyone here does.

Usually there is a session on Ross's as well as alot of info on all the percutaneous intervenions going on. you have to scroll thru the various lists for each years sessions to pick what interests you, but if you havent checked them out i can find he main link. the oly thing is you can really get interested in watching them all and ten realise hours have gone by

 

[Lynlw]

Thank you. I do have a book called Mattys Heart that I used to show my son what to expect. He had a better understanding after I showed him. It helped all of us really.
Yes that is the closest to us, but like any parent I would travel around the world in order to make sure he had the best care.
He has been going there since birth and his cardiologist really has a great way of explaining things and he is available literally anytime day or night. I have emailed him before on a Sunday at 11 pm and he responded in 15 minutes.
I will check out the book. Thanks again.

Matty heart is a good book. This one is more like a textbook with chapters on the various CHD w/ very good diagrams of each CHD or group of CHD that ofen go together compared to a "normal" heart and most of the different surgeries for CHD as well as all other kinds of info. I have the origonal one that was a hardback, so I dont know if they updated it since, since it wasnt available for a few years. Im glad it is back now, it is really good. I reccomended it to some of Justins docoors and they got some to pass out a while ago

 

[Greg~]

Hi Eln1559, welcome to the forum.

My youngest son was born with aortic stenosis too, and at 7 weeks old we underwent his first surgery. His surgeon was able to widen the valve opening and decrease the stenosis but we were told it was only a temporary fix. Then at age 7, he went in for the same procedure in hope to buy more time and allow his heart to reach adult size so either a mechanical or tissue valve could be inserted. But at age 10, he needed another surgery so we had to make a decision, mechanical, tissue, or the Ross procedure. We prayed about it and felt very strongly that the Ross procedure was the way to go.
I'm very happy to say my son will be 27 years old in February and his cardiologist says his valves are doing great. That's 17 years (and counting) of successful results.

I would highly recommend you continue to ask questions and get second opinions from other cardiologists if possible. I know how heavy this decision is and as parents we never want to see our children go through anything like this. But understand, regardless of the procedure you choose, it will extend his life.

I will pray for you and your son, in the hope that God will give you the wisdom to make the best decision and the strength to endure.