new to list looking for imformation on indications for surgery RE: Ross-Procedure

[Rhonda]

Hi all,
My name is Rhonda I am a 33 year old mother to a 9 month old beautiful baby boy named Jason William. Jason has moderate AS and severe aortic insufficiency, and an enlarged and thickened left ventrilce, he is on Captopril 2mg 3 x aday. Jason was dx at 2 weeks of age with mild forms of each condition but has quickly progressed to more severe. He currently sees his Pediatric cardiologist on a monthly basis for the past 3 month. We recently went and had a second opinion done at U of M. Only because the family did not believe that he had such a serious condition, because to look at Jason all you see is a healthy 20# 4 oz active baby boy, though he sleeps much more that a "Normal " child he naps aprox. every 1 1/2 to 2 hrs because he tires so easy. Anyway what I am in search of is indications for the Ross-procedure. Both dr. told me he will have to have this surgery done. Jason regular pediatric cardiologist told me he could have th surgery from 1 moth to 2 years, our second opinion doc told us basicly the same thing except he mentioned that some doc would choose to do it now..SO Ok what is that indicates that it is time tho have the surgery. I am fightened by the current damage being done to his heart and also the possiblilty of sudden death, yet I am afraid of the surgery too. A mother form another support group had mentioned this site to me, she also mentioned things like pressure gradient and other terms to that sorts, which i honestly have no idea what they mean. Soo if any one knows what question I should be asking at our next PC appt. (may16th) I would be more than appriecative.
Thank you soo much for your input and time

 

[BrooksM]

Better sooner than later.

Better sooner than later.

As a father of 4 healthy boys my heart goes out to you, I can't imagine how much more difficult this would be for me if it was one of my kids instead of me.
I was torn between a Ross and the newer Synergraft AVR, if it was one of my kids I would do the Ross. Your PC will probably know next to nothing about all of this, I have found that to get any current up to date info I needed to do it myself. If you decide on the Ross procedure find a surgeon that has done a lot of them. I was recommended to a pediatric surgeon at U of M but I decided against the Ross and did not follow up. My advice would be to find the best surgeon and travel wherever need be to get it done. There will be more people dropping by in here who may give be able to give you some names. I know Oklahoma has a prominent Ross specialist. Also investigate the Synergraft pulmonary valve, they have done many more of those than Aortic and the data is very good (I have not seen data for children, however.)

Good luck and keep us posted, you will be in our prayers.

Brooks McIntyre
Severe AI, planning Synergraft AVR with Dr. Zehr at Mayo

 

[Mara]

Sorry fot he long post!

Sorry fot he long post!

Hi Rhonda.
I had the Ross last summer. I am a lot older than Jason, but in my research on the Ross I found a lot of imformation about pediatric Ross patients. A surgeon from whom I got a second opinion , Dr. John Brown at Indiana Univeristy Med Center, does about 4 pediatric Ross procedures a week. He sometimes does adults but mainly he does pediatric patients.

There is another really good webpage for Ross people and a lot of the folks on there were parents of kids who had or were having the Ross. http://www.myrossprocedure.com.
I am not disuading you from our site, but as far as I know you are the first pediatric Ross person we've had.

Little kids, like your son, usually do really well with the Ross. From my research I found information that said that kids do well because the new aortic valve is their own and grows with them.
The newer synergrafts have had promising results with being re-poluated by the patient's own cells. I got the CryoLife pulmonic synergraft.
There is a lot of information out there about pediatric Ross.

Before my surgery, I asked my pediatric cardiologist about the Ross and he endorsed it whole-heartedly. So, it is pretty common among little kids.

Brooks said that Oklahoma has a good Ross guy, I think he means Dr. Elkins, as far as I know he olnly does adults. The myrossprocedure site had a lot of folks who had Elkins do their Rosses. My impression was that those people all got hooked up by Elkins and were part of a study he was doing.

My advice, personally, I'd pick a doctor who does pediatric cardiac surgery, not someone who does adults. Dr. John Brown at IU might be a good person for you to get an opinion from. He primarily does pediatric cases and only does a few adults, and only in the right circumstances. That's why I did not choose him to do mine. I wanted a surgeon who did adult Ross procedure. Pediatric cases have a whole different set of variables than adults. You wouldn't take your son to see an internal medicine physician for a cold, you take him to the pediatrician. You wouldn't go to a urologist for a Pap smear would you? You go to the gynecologist.

I disagree with Brooks that you need to travel far from home. I did not. I stayed in Indianapolis, got a great surgeon and am very happy with the outcome of my Ross. However, Dr. Zehr at Mayo is an excellent surgeon and I am sure that Brooks wil do great!
UofM has a great cardiac program. If you are comfortable with a surgeon there, go for it. It's better to be close to home sometimes where you have a support system. Your son might be too young to care, but you and your husband will need the support. This is just my personal opinion. Some folks feel differently.

Ask the pediatric cardiologist to explain pressure gradients to you. You have the right to know. The doctor works for you!
The aorta has very high pressure on it, so it's important to keep an eye on how it's holding up. The insufficient operation of the heart makes the heart muscle get bigger, just like lifting weights makes your bicepts bigger. THe key with any valve surgery is for the patient to be sick enought to need the surgery, but not so sick they won't tolerate it.
I was diagnosed at age 3 or 4 and followed since then. I had my Ross at 33. Gradually, my AS/AI got worse. The pediatric cardiologist predicted I'd be mid-30's when I needed the surgery.
I wish your son could be the same way. But, he's young and will be able to get past the surgery quickly and then think of all the fun he'll have!

check out this site, too. http://www.columbiasurgery.org/divisions/cardiac/dm_ross.html


Here is Dr. John Brown's info. A phone call won't hurt.
Department of Surgery
Section of
Cardiothoracic Surgery
Emerson Hall 212
545 Barnhill Drive
Indianapolis, Indiana
46202-5125

317-274-7150
Fax: 317-274-2940

Good luck.
Mara

 

[ALCapshaw]

Hi Rhonda,

I'm sorry to hear about your son's difficulties.

You are doing the right thing, educating yourself on the subject and the surgery. Mara gave you a lot of GOOD information. You might want to read the personal stories under Ross Procedure on the main VR.com menu, although, as Mara pointed out, your son may be the first pediatric case on VR.com. Some other good sites are American Heart.com (American Heart Association), ClevelandClinic.com (#1rated heart hospital), and the Mayo Clinic. (see reference section for more info)

By all means, I recommend that you find a surgeon who SPECIALIZES in PEDIATRIC ROSS PROCEDURES.

The three top hospitals in SE Michigan are Beaumont Hospital in Royal Oak, Henry Ford Hospital in Detroit, and the University of Michigan Hospital (#26) in Ann Arbor. If you can't find anyone you are comfortable with there, the #1 Heart Hospital is the Cleveland Clinic. My own surgeon, Dr. James Kirklin does a LOT of pediatric surgeries at the University of Alabama at Birmingham Hospital. He is the head of the heart transplant group which is rated #5 in the country.

Best wishes in your quest for understanding and resolution.

'AL'

 

[sylviayasgur]

hi rhonda!
welcome to this site. this is a wonderful place with very supportive and caring people. everyone here is great and really helpful. i don't think i could have made it without their support.

i am so sorry to hear about jason. i truly feel for you. my heart goes out to you. i have 2 daughters and can't bear it when they are sick; i just can't even imagine how painful this must be for you.
we are here to help and stand by you as you go through this difficult ordeal.

mara gave you a tremendous amount of info. when my husband and i were surgeon-hunting, we went to columbia-presbyterian.
(see the site mara mentioned). there is a surgeon there who is known for doing the rp (ross procedure) on ONLY kids. he has done many rp's and has a reputation as one of the best for doing them in children (he does ONLY children).

elkins in oklahoma is a buddy of dr. stelzer's (joey's surgeon) and does many rp's, but has been using the cryolife synergraft a lot lately. i think he has some reciprocity with cryolife (the company) and they supply him with many of these hard-to-find synergraft valves.

the rp, as mara mentioned, is supposed to be one of the favored choices in children, because the valves grow with the child. no need to replace a valve because it's no longer a perfect fit.
would you consider having your dr send a copy of records to dr. quaegebur and getting a second opinion from him in that way?

please keep us posted and let us know what happens. you and jason and your family are all in our thoughts and prayers.
we are here to help, please use us.

God bless,
sylvia

 

[hensylee]

Here's the post that I put somewhere else all by itself:

Hey Rhonda - my goodness, you must be suffering. Right along with little Jason. When a baby is sick it is so hard on you as you are so helpless. He sounds like a wonderful little fella that we would all like to cuddle. I am so sorry he is in such a predicament healthwise, but the medical community has such good new developments that he will probably come through this and be whole. I didn't have valve replacement (bypass, was mine) so can't advise there, but I can surely support you all the way from now til then and others will be able to give you advice, plus support. Please keep us updated as things progress towards Jason's surgery. God bless