valve replacement for four-year-old boy

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B

Belen

Hi,
Could anybody recommend a surgeon and a pediatric cardiologist we could see to ask for a second opinion? We live near San Francisco and we are currently seeing a cardiologist at UCSF children's hospital. We were considering checking Lucile Packard children's hospital at Stanford. Any recommendations regarding the choice?

Our son Gregorio is four years old and he will need a valve replacement in the next few months. He underwent an Arterial Switch procedure when he was born, and he had a valvotomy on his bicuspid and defectvie neo-aortic valve. We were hoping we could wait a few more years, but the time to replace the valve has come. We need to determine the time and the procedure (choices are not many in our case I guess) and, although we think his present cardiologist is very well prepared, we feel we need more guidance and would like to check for a second opinion and other possibilities.

Any advice or comments are welcome.

Belen (Gregorio's mom)
 
Hello Belen and welcome. You might look up GIJanet in the members list and send her a PM. There are a few people here that have children that have had to have surgery, but she comes to the top of my mind the quickest.
 
Thank you very much, Ross!! I'll search GIJanet in the members list and send her a PM.
Best,
Belen
 
Hi and Welcome!:)
We have a group of valve replacement moms who have seen their children through replacement, and I think they are among the strongest, bravest people on earth. Once the word gets around that you are here, I am sure they will post and try to answer your questions.
Let me see if I can get the ball rolling with a few emails.
 
Thank you, Eva! Prayers are very welcome, too. I know by experience that they help.
Best,
Belen
 
Even though I didn't have a child that had surgery, I have a congenital heart defect so I see pediatric cardiologist and surgeons. In LA, Dr. Vaughn Starnes is a good option (I consulted with him but he didn't actually do my surgery although I'm pretty sure there is another adult on here with ACHD who did have him as her surgeon). Dr. Dearani at the Mayo is very good (he did my surgery), as well as Dr. Bove in Michigan and Dr. Pedro del Nido at Boston's Children's. Those are good places to start and there will probably be others along to recommend some other options. Good luck to you all.

Kim
 
Hi My son also was Born with Transposition of the Great vessels but was not able to have a switch because of his PS. Who/where did your sons first surgery? Is there a reason you don't want them to do the next one? Or are you just looking for 2nd opinions? If you just want 2nd opinions but plan on keeping the origonal surgeon, I'd have different suggestions than if you wanted to go somewhere else. Lyn
 
Janet's daughter Katie was operated on (at least twice) by Pediatric Surgeon Dr. Bove at the University of Michigan

Google "Dr. Edward Bove" and you will find links to his background and experience (which is Extensive!).

Also do a Search for Dr. Bove (or just Bove) on VR.com to find posts from members on their experience with him.

Here is Janet's signature line from her Member's Profile:

Janet, mom to Trip & Katie (my CHD child)11-19-00; heterotaxy syndrome w/dextrocardia, situs ambiguous, polysplenia, CAVSD, DORV, L-TGV, BSVC, PS, IIVC, & a leaking common AV valve (mitral & tricuspid are merged); now 5 surgeries under her shirt; we took advantage of the 2 for 1 OHS sale on 7/12/05 at UofM by the gifted Dr. Bove; fontan & annuloplasty of common AV valve; then valve replacement w/a Carbomedics prosthetic valve
 
Can't add to all the good referrals you got here, but just want to say welcome- "heart moms and dads" are the among the bravest people I know, respect and admire!
 
Another VR.com Member with Extensive OHS Experience from Childhood is Gnusgal.

Here is the information she posted in the Member's List:

About Gnusgal
Surgery
10 heart surgeries, most recent- lead repair for recent bi-v ICD.

Heart History
situs inversus, dextrocardia, PS, pacemaker (#4), corrected ASD and VSD, cctgv, complete heart block, ventricular dissynchronization, etc...

Medications
coumadin, lanoxin, lasix, toprol, vasotac, asprin, aldactone, etc...

Location
Texas

<SNIP>

Signature
Niki (32) situs inversus, dextrocardia, PS, corrected ASD and VSD, bt shunt removed, cctgv, mechanical tricuspid valve, pacemaker (#4 turned off, then back on, and now off again), ICD (removed due to infection), bi-v ICD (implanted 3/16/07, lead revision 5/25/07, lead revision 9/22/08, lead revision 11/10/08, and now???)...
 
Welcome to the vr family. I had my surgery done at Stanford, and saw the children's unit and it looked real good. Can't recommend any children drs but if I were you I would check it out since you are so close. Great hospital I really liked the way they treated my family. Good Luck and God Bless. Keep us posted.
 
Hello, Belen, my surgeon here on the east coast used to be in Pittsburgh and children were his specialty before he came to Fredericksburg VA to start a cardiac unit - everyone in this area used to have to go to Richmond. His name is Dr John Armitage, his office number is (540)372-7792. His office staff and his nurse pracs are the very best. I don't know if you will be able to travel so far, but this man is remarkably good and also a terrific human being. He knows people all over the country, too, and another wonderful children's specialist that I got to meet is Dr. Duke Cameron at Johns Hopkins in Baltimore MD. He operates on kids with Marfans, and very young children, as well. My very best to you. My surgery was so easy compared to the idea of any of my kids ever having such a thing done - to see your child in pain and in danger - you will be so tested and I wish you strength and courage! Contact either doctor's office for help, they are simply the best.
 
Hiya and welcome,
I'm a heart mum too and although we're in the UK so can't help with the hospital side of it, I'm more than willing to talk or share our experiences of valve replacments (Chloe had MVR at 18 months of age) if that would help you at all??
Love to you
Emma
xx
 
I just want to say welcome to the community Belen & I offer my prayers and well wishes for your little boy, Gregorio. I hope that you find the answers that you seek from some of the moms here whose children have undergone what your child faces in the near future. I know in my heart that all will go well with your boy!

Take care!
 
Thank you very much to all the support and information! I am so glad I found this fourm (my husband says thanks, too). I am going to start working with the contacts and info I received.
Belen
 
Lynlw said:
Hi My son also was Born with Transposition of the Great vessels but was not able to have a switch because of his PS. Who/where did your sons first surgery? Is there a reason you don't want them to do the next one? Or are you just looking for 2nd opinions? If you just want 2nd opinions but plan on keeping the origonal surgeon, I'd have different suggestions than if you wanted to go somewhere else. Lyn
Click to expand...
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Hi Lyn,
Gregorio had other complications, too, but I know we were lucky that he could have the arterial switch. I hope things are going well with your son.

My son's first surgery was at UCSF. His surgeon was Dr. Tom Karl. I think things went well, and I believe we are in good hands, but sometimes I feel I need more guidance from our cardiologist, and Dr. Karl is not working at UCSF anymore, and I've heard good things about Stanford, too, and they're web page for preparing children gave me a good impresion. I think right now I'm just looking for a second opinion, and worried about making the best choice possible among the two centers (I want to stay in this area because we have another child and we have the support of my extended family here).

Best, and thanks,

Belen
 
Emma said:
Hiya and welcome,
I'm a heart mum too and although we're in the UK so can't help with the hospital side of it, I'm more than willing to talk or share our experiences of ---valve replacments (Chloe had MVR at 18 months of age) if that would help you at all??
Love to you
Emma
xx
Click to expand...

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Hi Emma,

Right now I still don't know about the specific options we have for the surgery (our cardiologist is going to consult with other doctors and the surgeon and contact us again next week), but if it's OK with you, I'll write again later to ask you more about your experience. I would like to know if there are things I could do to help Gregorio through all this. I don't know if we are going to have many options, since he is so young, and I'm also worried about how things are going to be after the surgery.

I hope Chloe is doing well, and thanks for writing,

Belen
 
Sorry I meant to ask have you looked into any of the CHD groups Since your son has a complex CHD and issues beside his valve, maybe that would be helpful. Lyn
 
Thanks Justin is doing well right now he is 20 and has had 5 OHS plus a couple other surgeries but played sports was a Scout ect
 
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