Ross procedure in pediatric case

[delvalle6]

As I read through your posts, I realize I am not as well informed as I should be. My son's cardiologist just informed us that his Aortic Stenosis has worsened, he has developed a "leak" which is causing the ventricle to enlarge. He was discussing the need for future sugery and recommended the Ross Procedure. I live in Vancouver, Wa, but am selling my home and looking into which hospital will be best for my son to have his procedure- that is where we will re-locate. I was lead to believe that the surgery would start a "count down" to the next surgery. I've see a lot of posts regarding cleveland, but mostly from adults. Any recommendations for patients around my son's age?? (he is four) Any information regarding physicians, hospitals and procedures will be greatly appreciated.
Thank you.

 

[Lynlw]

I have a few friends that are parents of kids that had the ross procedure I will pass this on and see where everyone goes, I am pretty sure Matt who mom jeanne is a member here had the ross
also here is a link to TCHIN protraits by procedure, you can go to ross and read different kids stories http://tchin.org/portraits/by_treatment.htm
also there are a few kids here that had the ross, their moms should be aorund soon, Lyn www.caringbridge.org/nj/justinw

 

[sylviayasgur]

hi,
welcome to this site; it's a wonderful place for info, support and hand-holding.
my husband is the patient and he had his ross procedure done by dr. stelzer in nyc, who does adult rp's.
there is, however, a surgeon at columbia presbyterian hospital in nyc, by the name of dr. jan quaggebeur (unsure of the exact spelling) who specializes in pediatric ross procedures. he has done numerous and from what i've heard, he is incredibly talented.
burair (pappahappystar) is one of our adult members who had his rp done by dr. quaggebeur.
you might want to contact him; i'm sure he'd be happy to answer any questions you might have, as will i.
please feel free to email me anytime.
hope this helps,
sylvia

btw, why relocate altogether? many hospitals have facilities for patients and their families who travel great distances and if they charge, the charge is extremely reasonable.

 

[LuvMyEvan]

Hello! My son had the Ross-Konno procedures (together, the Konno part is that they cut down into his left ventricle to make room for his pulm. valve) at 4 1/2 months. He had it done by Drs. at Cincinnati Children's.

I would really consider whether you want to relocate based on treatment before you go too far with the process. The truth is that doctors can't always predict when the next surgery will be. We were told that my son's would be when he was "2 or 3 years old." He is now six and stil hasn't had the "next" surgery. He probably won't until he's at least seven, maybe not even then.

What I would do, in searching for the surgeon you want, is call around some of the top ranked pediatric cardiothoracic surgeons and ask about their personal risk rates, experience, etc. Many pediatric cardiothoracic surgeons perform surgeries routinely that are much more risky than a Ross procedure. With that in mind, it may make your decision easier as for who to go with. Obviously I think very highly of the docs who worked on our son, and others will likely feel the same if they've had a good experience with their doctors. You may even find that your local children's hospital is the best fit for you. Call around, ask to meet the surgeons, ask your child's Ped. Card. who they would take their own child to, etc.

Good luck!

 

[delvalle6]

Thank you for your responses. I was looking at cleveland and cincinnati because two of the top ten pediatric hospitals are there. The area seems to be affordable and there appears to be a positive job market for my career(if I work after he gets his surgery) To answer some of your questions--

"You may even find that your local children's hospital is the best fit for you"

When Sammy was 4months old, he had RSV and was intubated and in the PICU for two weeks. During that time I had to closely monitor his care as the RN's tried to hang another child's meds on Sammy's clip on four different occasions. I do not have any confidence in the care at our local hospitals. The physicians are excellent, but the rest of the staff....

"why relocate altogether? "

We are looking at re-locating because we want to be close to the hospital and physician that we choose, and because this will not be cheap we need to find an area that is more affordable. I want my son to have the best care possible yet still provide for my other children.

 

[francie12]

Two tips from someone who has been researching this obsessively... Dr. Jan Quaegebeur at Columbia Presbyterian and Dr. Ed Bove at Mott Children's, Ann Arbor, Michagan.

The very best of luck to you and your son.

 

[Lynlw]

If you want to call the some hospitals Uof M, Boston, CHOP are usually ranked very high for childrens' cardiology.
My only thoughts about relocating close to the hospital/surgeon you like is i know alot of time, the surgeons move or retire, heck our surgeon moved to switzerland from Phila. and it is usually w/out much advance notice. I've seen it happen alot in the past few years, I would hate to move my family and then have to fly to see the surgeon anyway. I also don't know if you are close to family where you live now and if they are the family that help out. i know especially if you have other children people to take care of the siblings while their brother or sister are in the hospital is a pretty big concern.
I am sorry you or any one has to go thru this. it stinks lyn

 

[delvalle6]

Thanks. I have to say, this whole thing has taken me by surprise. the last time Sammy saw the cardiologist was just over 2 years ago. At that time, they told me that he may need surgery at some point in his life, but it might be in his 20's 30's or later. They made his appointment for 2 years later. We went in a couple of weeks ago and they tell me that he is sick. He doesn't look sick to me, but I could tell, sometimes, when he would get tired fast, or when his little heart beat so hard it felt like it was going to jump ot of his chest. I am having a real hard time with this. I just want to find someone I feel will give Sammy quality care, not puch him to the end of the priority list because they don't have time to care. Anyway, thanks.

 

[Andrew'sMom]

Hi! I second Francie's post on Dr. Q or Dr. Bove. They top my current list, although my Andrew currently remains in the waiting room for hopefully a long time, at least 'til his late teens we're hoping! I was in the same boat as you, my son having been diagnosed as an infant and we were told his heart defect was a benign condition that **MAY** require surgery when he is middle-aged or later. Just this spring at age 5 during his annual echo we come to find he has a dialted ascending aorta & ventricle size at the highest end of normal. He has aortic & mitral regurg, which are mild and aren't too terribly impressive right now. But anyway, like Francie, the events of this spring has gotten my research butt in high gear (borderline obsessive!) ... so at least I now have a much greater understanding of his defects, the various procedures available to correct them and which surgeons are out there. Even though the whole situation is out of my control, having done my research makes me feel a little more at ease with the future. Wishing you the very very best ... you might PM Adam's Mom, her son is 11 and just had a Ross this summer. Good Luck.

 

[Lynlw]

Thanks. I have to say, this whole thing has taken me by surprise. the last time Sammy saw the cardiologist was just over 2 years ago. At that time, they told me that he may need surgery at some point in his life, but it might be in his 20's 30's or later. They made his appointment for 2 years later. We went in a couple of weeks ago and they tell me that he is sick. He doesn't look sick to me, but I could tell, sometimes, when he would get tired fast, or when his little heart beat so hard it felt like it was going to jump ot of his chest. I am having a real hard time with this. I just want to find someone I feel will give Sammy quality care, not puch him to the end of the priority list because they don't have time to care. Anyway, thanks.

you know at least you have others now that know how you feel we have been there and it is so hard when you are all alone. Justin was DXd at one day old and had his first surgery at 10 days, they told us he would need his next surgery between 18 months and 3 yo, he needed it at 18 months, then since it was 17 years ago and they didn't know long term stats for the way they did his repair, they said he may be done or he may need to have surgery thru out his life. we went for his check up when he was 10 and they said see you in a year, a month later his origonal surgeon and Pc moved back from switzerland so I took Justin there just so they could see a baseline when he was doing "well" well imagine my shock when w/in the month he had a cath and emercency surgery the next day at the new hospital his docs went to. then last year he needed another surgery that we had been putting off for years and thought he wouldn't have for a few more years. There are some great hospitals and they will treat your son and family w/ the respect and care you deserve and if anyone tries to make you feel like he isn't the most important person look elsewhere.
one good thing, w/ the internet, free airline programs to fly kids where they need to go for surgery if you can't afford it and places like ronald macdonald,they really are getting good as making it as easy for families as possible to get to any of the major chd hospitals.
I don't know if you know this, but for the most part you can contact all the bigger centers and have your sons records sent to them and get doctor opinions that way, you don't even have to go see thm in person until you narrow it down to who you would trust w/ the most important thing in your life. and if you need help just ask, I'll keep you in my prayers Lyn

 

[PapaHappyStar]

Thanks. I have to say, this whole thing has taken me by surprise. the last time Sammy saw the cardiologist was just over 2 years ago. At that time, they told me that he may need surgery at some point in his life, but it might be in his 20's 30's or later. They made his appointment for 2 years later. We went in a couple of weeks ago and they tell me that he is sick. He doesn't look sick to me, but I could tell, sometimes, when he would get tired fast, or when his little heart beat so hard it felt like it was going to jump ot of his chest. I am having a real hard time with this. I just want to find someone I feel will give Sammy quality care, not puch him to the end of the priority list because they don't have time to care. Anyway, thanks.

Hi,

I understand this can be really hard to deal with -- I have a four year old son as well, I am thankful it was me who had the Ross ...

I think you should interview the surgeons who you think might be the ones you would choose, and visit some pediatric hospitals as well. As far as my own experience goes I would without hesitation recommend Dr. Quaegebeur and the Children's Hospital at NYP. We moved to New York for my surgery as well ( sublet a place right across from the hospital after scouring craigslist ).

All the best -- send me a private message if you have any questions.

 

[Lynlw]

Oh and i wanted to add the surgeon that most CHD parents took their kids to see at Cleveland was Dr. Mee, he has since retired in the last year and most of his patients that i know now go to other hospitals for their surgeons, instead of staying at cleveland, Lyn

 

[RossGurlie]

My Ross Procedure

My Ross Procedure

I had my Ross Procedure when I was 13 years old at Texas Children's Hospital. I love TCH! It's a wonderful hospital but it seems it'd be very far away. I had Dr. Fraser as my cardiologist who I think is excellent!! He used to work at the Cleveland Clinic (which I also know is good) but then moved down here. He really cares about the patients. I emailed him like 8 or 9 months after I had surgery to see if he would help me with something with school and he emailed right back saying how glad he was to hear from me and of course he'd help me. He is also very determined. He spent 11 hours with me in the OR trying to get my heart just perfect!! So....I really like him but I know a lot of heart kids go to Ann Arbor. Texas Children's Heart center is also rated among top 3 in the nation and the hospital as a whole is rated among top five.

That's pretty much what I have to say...hope it helps.

 

[delvalle6]

You've all given me a lot of information... have any of you ever heard of Ross Ungerleider ? Apparently he used to be in Cincinnati, but is now in portland, OR. I don't have great faith in the hospital he is working at, but he sounds like he is very qualified to do the Ross procedure. After speaking to you all here, I am more convinced than ever that I should get a second opinion. In my research, I am finding that while the cariologists like to wait as long as possible, the surgeons want to proceed earlier saying that the results and recovery are better.I guess I have more research to do... I wish there was another way to repair the valve other than surgery.

 

[Lynlw]

One thing to remember when you read posts here many of the patients are adults. somethings are alittle different for kids. alot of times depending on the how the child is doing, if possible it helps to wait to give the child time to grow bigger since the valves won't grow w/ them and they can out grow the valve sooner needing even more frequent replacemanets, so in some cases it is best to let the child get as big as possible, lyn

 

[JeanneImp]

I have a few friends that are parents of kids that had the ross procedure I will pass this on and see where everyone goes, I am pretty sure Matt who mom jeanne is a member here had the ross
also here is a link to TCHIN protraits by procedure, you can go to ross and read different kids stories http://tchin.org/portraits/by_treatment.htm
also there are a few kids here that had the ross, their moms should be aorund soon, Lyn www.caringbridge.org/nj/justinw

Nope not Matt. His last surgery was the Konna and mechanical valve replacements.

There are many childrens support groups on line. You will find many who have had the Ross.

IMO, I would check out several docs and call or email with a list of questions, most important, the stats they have.

Good Luck....

 

[adamsmom]

Welcome!!

Welcome!!

I am so glad you found our forum. Hopefully we can help you to be well informed and confident of the decisions you make as you chart the course for your child. I have been there, done that and found this forum invaluable. My best suggestion to you is to find the best known Ross surgeon in the area you want and if he does not do children, then let him refer you to someone, because he will know who is the best. In my case- Dr. Ryan is reknowned in the Dallas area, and he referred me to Dr. Mendeloff out of Medical City hospital. He is quite qualified- almost over-qualified, and I could not have wished for better. After waiting all of his life, with check-ups every six months, my son, Adam (11) finally had his Ross in June. It was an experience I am very glad is now behind us, but not as bad as I had built it up to be. Everything went very well, and this forum helped me know what to expect. Please ask any questions and make a home here with us. We'll hold your hand through it all!!

 

[JeanneImp]

Two tips from someone who has been researching this obsessively... Dr. Jan Quaegebeur at Columbia Presbyterian and Dr. Ed Bove at Mott Children's, Ann Arbor, Michagan.

The very best of luck to you and your son.

Yep, they are great. Dr. Bove did Matt's Konna since he is so complex. There is also Boston Childrens and CHOP.

 

[Bryan B]

I just thought I'd throw my surgeon's name out there too (in case you want to move to NC ). Dr. Jaggers is the director of pediatric cardiothoracic surgery at Duke University Medical Center in Durham, NC (#3 rated heart hospital in US). He specializes in pediatric heart transplantation, ross procedure in children and adults, aortic valve repair, and other pediatric cardiac surgery and procedures. I could tell he was used to working in small spaces because my scar is only 5" long.

Wishing you and your son the best possible outcome.

 

[Lynlw]

Nope not Matt. His last surgery was the Konna and mechanical valve replacements.

There are many childrens support groups on line. You will find many who have had the Ross.

IMO, I would check out several docs and call or email with a list of questions, most important, the stats they have.

Good Luck....

I knew he had the konno but wasn't sure if he had the ross kono