Looking for best pediatric Ross surgeon in Midwest

[francie12]

Hello everyone and thanks to all of you for your knowledge and insight. I am looking for the best Ross Procedure surgeon in the midwest. Since my son is 12 yrs. his surgeon would need to do pediatrics. Thanks for any direction anyone can point me in. Jane, Matt and family

 

[Turkey Hunter]

Hello

Hello

Well,

There are many great RP docs.....mine perfected his RP abilities in Europe on infants and I would recommend Dr. Gustov Pettersen at the Cleveland Clinic Foundation. He is phenomenal.

Also, In the Cincinnati, Ohio area there are a couple of great surgeons....I will have to get their names from the friends of ours who's four month old was given the RP. (By the way this four month old is now four years old and just seeing him a couple weeks ago....he's doin great considering all he has been through.) He is a champ, he will live long and do great things.

I will forward a link of this post to his mother to give her the opportunity to post more specifics.

God Bless and Welcome.

Ben

 

[LuvMyEvan]

Hello Francie,

I'm Katie. My good friend Ben told me that you were looking for pediatric cardiothoracic surgeons experienced in the Ross Procedure and sent me the link to stop back in here. I haven't stopped in at vr.com in a long time so I'm going to have to learn my way around again.

My now-4-year-old son, Evan, had the Ross-Konno Procedures done consecutively at Cincinnati's Children's Hospital Medical Center (CHMC). Drs. Manning and Pearl were his surgeons (with Manning being his main surgeon, Pearl assisting). They did a most excellent job. Most children who have the Ross-Konno so young (he was 4 1/2 months old) end up with a re-replacement of the donor valve by age 2 or 3. Evan is just now facing a possible new donor valve... and he will be 5 in May.

I don't know the exact # that Drs. Pearl and Manning have done, but I can tell you that Evan was their 14th one that year alone. They have done the Ross-Konno with great success even on children as young as 5 days old (maybe younger by now, as this was 4 years ago that I got this information).

If you are anywhere near Cleveland, Cleveland's Rainbow Babies (I believe they're part of Cleveland Clinic) is also very highly regarded in the state of Ohio. I'd probably steer clear of Columbus for now because of confidential information that I received, but that's my own opinion. You have to meet with the surgeons in person and decide for yourself whom you feel comfortable trusting. I can't say enough good about the entire staff at Cincy Children's, though. Dr. Pearl's wife is (or was, anyway, I'm not sure if she still is) a nurse on the Cardiac ICU floor. That was nice to have her as our nurse just after surgery.

If you have any questions, do not hesitate to contact me.
Take care & good luck,

 

[francie12]

Thanks so much, Ben and Katie. I feel I have something to go on now. I've also had a strong rec. for Dr. John Brown of Indianapolis. Seems like Chicago would have someone--it's closer to us, but we will travel to find the most experienced. Again, thanks for your generous time and attention.

 

[Harpoon]

...If you are anywhere near Cleveland, Cleveland's Rainbow Babies (I believe they're part of Cleveland Clinic) is also very highly regarded in the state of Ohio....

Stay the HELL away from Rainbow Babies, please...

First off, they are NOT associated in any way shape or form with Cleveland Clinic. It's a totally seperate hopsital and organization.

Rainbow Babies has a reputation for taking difficult pediatric heart cases, finding they are above their heads, then dumping the cases off on the staff at Cleveland Clinic's Chilren's Hospital.

If you're going to Cleveland, the ONLY place to be is Cleveland Clinic, period.

 

[LuvMyEvan]

That's interesting because I know plenty of people with complex heart children who use Rainbow Babies and swear by them.

Also, U of Michigan has Dr. Bove who has a great reputation with incredibly complex pediatric cases (far more complex than Ross Procedures). He might also be someone to contact.

 

[Turkey Hunter]

Easy Harpoon........

Easy Harpoon........

This is just a family looking for places to talk with potential surgeons.....not someone giving a complete "this is where you should go" statement.

We have all have and heard the good and the bad about every surgeon and hospital.
Honestly, I would never let Ross's surgeon from CCF ever touch me....I was not impressed. (long story)

But as you have read, Ross is extreamly pleased with his relationship with that particular surgeon.

I believe that our job here at VR.com is to give the new member every potential surgeon and/or doctor, it is then their job to make the very personal decision on who they choose to deal with.


Just my $0.02 worth


Ben

 

[LuvMyEvan]

I agree, Ben. I can only give our own interpretation and how we were treated by certain docs, as many others do the same. Not everyone gets the exact same treatment by each doctor. What it comes down to, I think, is you have to go with the doc you are most comfortable with. You have to be able to trust this person with a human life (whether your own or your child's). That's a big decision and a person needs to be able to find peace with whatever decision they've made. They have to know that they've made the best choice for *them*. It's not the same for every person.

Personally, with pediatric cases, I'd feel more comfortable in a facility that successfully handles more complex cases (such as Hypoplastic Left Heart Syndrome, TGA, Ebstein's, etc.). If they can handle those cases with great success, they should be able to handle a Ross.

The deal I heard with Columbus is that they were being investigated for similar incidents as what occured with Dr. Norwood (the man at Nemours who invented the fix for HLHS). Just something to think about if anyone is considering Columbus. I have no idea how true it is, or if the investigation is going forward at this point. All I know is that a very reputable source said there was a possible investigation there within the last 6 months.