Second OHS for my son. Calling all heart moms...

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cherylchapa

Well-known member
Joined
May 14, 2009
Messages
171
Location
Orange County, CA
I posted an intro in heart talk but was told I should post here too. My son, Chris (pictured in my avatar) will be undergoing his second OHS this June. He needs a pulmonary valve replacement. Right now we are in the process of choosing a surgeon which feels like walking through mud up to my knees. It is so slow-going! How do you do it? When he had his first surgery at 5 months old to repair tetralogy of Fallot, there were very few choices to make. The cardiologist chose a surgical program and surgeon and just sent us there. She said there were none better in the area for that type of surgery so that's where we went. This time I was told to look up the surgeons in our area at CHOC, CHLA, and Rady in SD and research them. Then make a short list and bring it back to the cardiologist for his thoughts. Then I'm supposed to ask the cardiologist who he would choose if it was his child. Huh? Why couldn't he just tell me his choice and a couple of alternatives? Making me do all the leg work when I'm already worried out of my mind!:confused:
So if any of you heart moms out there could give me some advice, I would greatly appreciate it!
Thanks,
 
Hopefully our member GIJanet will see this request and offer some advice based on her Nation Wide Search for Surgeons for her daughter Katie who has had 5 OHS 'adventures' in her short lifetime.

Her current favorite Pediatric Cardiothoracic Surgeon is Dr. Bove at the University of Michigan. You can find links to his background through a Google Search for "Dr. Bove".

You might also Google "Pediatric Cardiothoracic Surgeon" (or Surgeons) and do a Search for "pediatric" on VR.com

Good Luck in your Quest!

'AL Capshaw'
 
Two of the Top Rated Cardiothoracic Surgeons in California are Dr. Laks at UCLA and Dr. Craig Miller at Stanford.

You could call their offices, tell them what your son needs, ask if they do a lot of that type of surgery on young patients and / or if they could recommend any surgeons for your considertion.

I'm thinking that GIJanet also had a California Surgeon on her 'short list' of pediatric surgeons, but I don't remember his name.

I'm thinking there is a Congenital Heart Disease (CHD) Website that might also be a good source of information. Surely our Heart Moms can help. Hope they come forward.

'AL Capshaw'
 
Cheryl,

When I asked my son's Cardiologist for a list of the best in the country, there were 2 in CA....Dr. Hanley at Stanford and Dr. Vaughn Stroms (sp) at USC. My doc. is in VA so these names come to mind as leaders in this field. I think there are some folks on this forum who have used these surgeons and hopefully they'll chime in.
Good luck in your decision. I am meeting with Idrees' surgeon on Thursday!!
 
Sorry i can't be much help as your son as a different condition to mine and we don't have to find our surgeons here in the uk.
Just wanted to wish you the best as i know how hard it is to have to put your child through any surgery.Sending lots of hugs.
 
GIJanet recommended Dr. Hanley at Stanford in response to one of your other threads.

I suggested you call Dr. Laks at UCLA (and Dr. Miller at Stanford) for their recommendations.

You may find this profile of Dr. Laks to be of interest (found by Google Search for Dr. Laks). Note the following from this profile:

Dr. Laks went on to become the Director of Pediatric Cardiac Surgery at Yale University before being recruited by UCLA School of Medicine.

If you don't want to go to UCLA, perhaps he could recommend someone closer. You may need to choose between the convenience of staying local and going to a Nationally Recognized Pediatric Surgeon. Which is most important?

==================

Hillel Laks, M.D.

Dr. Laks grew up in South Africa and graduated with honors from Witwatersaand Medical School in Johannesburg. He went on to do his general surgery residency and chief residency in cardiothoracic surgery at Harvard’s two teaching hospitals, Brigham and Women’s and Children’s Hospital in Boston. “The five years in Boston were years of incredibly hard work filled with great expectations and possibilities. Early in my surgical residency, I decided to do cardiothoracic surgery because it was a specialty which brought together physiology, cardiology and the surgeon’s technical skills to achieve outstanding results.” Dr. Laks went on to become the Director of Pediatric Cardiac Surgery at Yale University before being recruited by UCLA School of Medicine.

In 1984, Dr. Laks established the UCLA Adult and Pediatric Heart, Lung and Heart-Lung Transplant Program. As the Director, he has watched the heart transplant program become the largest in the nation. Dr. Laks also began the UCLA pediatric mechanical assist device program which has become one of the largest of its kind. He performs heart transplants on newborns to the elderly and has donated his skill and support to children worldwide traveling to Russia, Peru, Thailand, Saudia Arabia and many other countries to perform complex heart surgery. Children from around the globe travel to UCLA to benefit from Dr. Laks' exceptional surgical talent.

Dr. Laks is internationally recognized for his creative surgical approaches to complex heart disease and his willingness to undertake the most challenging cases. He has pioneered many surgical procedures worldwide; recently developing a technique to use Gore-Tex patches to reinforce the wall of severely enlarged hearts. His groundbreaking preservation techniques for donor hearts have extended the length of time that hearts can be preserved, allowing us to use long distance and marginal hearts. Dr. Laks is the Principal Investigator in UCLA’s Total Artificial Heart Program and will soon implant an artifical heart in a patient, otherwise without hope. Recently, Mayor Riordan honored Dr. Laks with the “Treasure of Los Angeles Award” for his dedication and commitment to patients. He is also the recipient of the American Heart Association Award for Outstanding Achievements in Cardiovascular Surgery.

Dr. Laks prodigious research publications include over 300 articles in medical journals, numerous abstracts and many chapters in textbooks. His research projects include gene therapy for cardiac allograft rejection, assist devices, the total artificial heart and organ preservation. “I am very excited about the potential for permanent implantable devices and the artificial heart which will change the entire treatment for severe heart failure. As these new devices become available, they will save thousands of lives. UCLA will be at the forefront, as one of the centers that will take part in the Total Artificial Heart Program in 2001.”

Enjoying a broad range of outside interests, Dr. Laks loves to go horseback riding, scuba diving, and is also an avid jogger. He is a skilled artist and writes fiction as well. A passionate humanitarian, he lends his time and support to many causes. His daughter, Ellie, has inherited his passion and is an ardent animal advocate, working to further the humane treatment of animals in our society. His son, Dan, is a talented musician who is the originator and leader of the musical group, Birdsaw, and son, Ilan, is an accomplished contemporary artist and video producer.

A relentless worker, Dr. Laks is typically in the hospital from 7:00AM to well after 10:00PM. He is a member of Young Israel of Beverly Hills Synagogue and attributes his high level of endurance to his “observance of the Sabbath, which gives me the opportunity to renew contact with the Creator. I am able to read and study works outside of medicine to find the spiritual strength for the coming week.”
 
Thanks!

Thanks!

I will check out Dr. Laks. The only reason I hadn't looked into him is because he is not at one of the 3 hospitals my cardiologist recommended. My head is still just swimming from all this research. Are there any written instructions for comparing doctors so one can make an informed choice? Maybe a spreadsheet form or something? I need to put all the info in one place so that I can do the pro/con thing, I guess.
 
This is the second thread I started because someone said I should post here instead of in heart talk and reference heart moms in the title to get more attention from the heart moms. Maybe the other one should be closed.:confused:
 
I made my own spread sheet for comparing Surgeons.

After interviewing more than one, you can begin to form your own ideas about what factors are important to you and rate each accordingly.

The fact that your Cardio did not make a recommendation for a pediatric surgeon makes me suspect that he does not have one he would recommend and/or possibly has not faced your son's exact issues before. Either way, when it comes to finding a Fix for a problem that can only be fixed surgically, I believe it is best to Interview Surgeons for their opinion. I used information obtained from my Cardio, VR.com, and Cardiac Nurses I had come to know to get leads on 'Surgeons of Interest'.

It's not clear to me how far you are from UCLA, but if you don't want to go there, you could at least ask if Dr. Laks knows of a pediatric surgeon closer to your home.

Good Luck in your Quest.

'AL Capshaw'
 
Actually you are lucky to live in Cal, where there are a few CHD centers, but I know that also can make it harder to decide since there ARE a few choices,(we live in a simular area with lots of really good CHD surgeons/centers relatively close) even if you want to stay in the area. I don't know if you had time to check out the link I gave you for CHIN, but they have a page that has links for most CHD centers by state at http://tchin.org/cardiology/index.htm#CS02
They also have a prtrait section where you can read about different kids, by CHD or surgery http://tchin.org/portraits/by_diagnosis.htm

As for finding a surgeon that has alot of experience with PVR in TOF patients, again since Justin also has a pulm conduit, I feel "lucky" since MOST of the experienced CHD surgeons SHOULD have quite a bit of experience in PVRs and the stats are usually very good for straight PVRs especially in kids who haven't had multiple redos or alot of other issues.
 
Thanks for all the advice. I did check out CHIN and it was a great resource. I found another great resource last night at my daughter's GS meeting. One of my GS moms is a school nurse but evenings and weekends, she moonlights as a surgical nurse. I finally had a chance to talk to her and I value her opinion and advice immensely. She asked me who was on our short list. I gave her the names and she said Gates is an excellent choice. She also said that with such a good surgeon in our back yard, it would not be wise to go an hour (or two in traffic) away. This is the surgeon that her most trusted adult surgeon says he would send his kids to if they needed OHS. We will still keep our options open but what a glowing endorsement! I feel so relieved that someone that good is right here for us.
 
Nurses are a Great Resourse. Glad you made a good connection.

Nothing like Networking, whether it be on VR.com, friends, professional organizations, whatever.
 
I'm glad you were able to get good feedback about Gates since he is so close.
Hanley is good, but the only things I've heard that make some people nervous, is he is on staff at 3 or 4 cneters so he usually isn't around the day or so after surgery because he is at the other hospitals operating. So if there is a bump in the road, he might not be available.
 
Another person at work gave a good review of Gates. And he also knows a couple of other people who have had their surgeries with him. Now that I've heard good reviews about Gates, people who know him or know of him are coming out of the woodwork! A friend at work said I should pray to God to make it obvious. I did and now I have my answer! Unreal!
 
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