Two year old son w/ BAV

[Lynlw]

I suspect that Janet and her daughter Katie (a.k.a. gijanet) have the most similar background. See her profile in the Members List under "community".

She has settled on Dr. Bove at the University of Michigan as her favorite Pediatric Heart Surgeon. You can find his profile by Google Search which should lead you to the appropriate UofM site.

'AL Capshaw'

Are you saying Katie is close to MLKyle's son? Katie has pretty complex CHDs and needed one of the repairs that needed a couple surgeries. I am trying to think of Who that post here children has something close.

 

[Lynlw]

Dear Mike,

Thank you for telling me that about how aortic dissections are rare in children. That helps me breathe a little better...well...alot better...thank you! And my other two children had echos last week and they don't have BAV. My husband also had an echo...he doesn't have BAV; however his first cousin on his fathers side has two children who both have BAV...we think that is the genetic connection. Please keep me posted on your seven year old son. I wish you the best.

Thank you so much Al for your information.

What did they tell you at your sons appt last week? Did they say things were mild, moderate ect? OFTEN with babies and children they like to let the child grow as big as possible before they operate, especially with repairs kids will outgrow. Of course some CHD need surgery right away and you just have to deal with having rereat surgeries as the child grows, so alot of it depends on each child and how they are doing.
Which hospital are you currently taking your son to? IF it helps to read about other children http://tchin.org/portraits/by_diagnosis.htm is a good place to look there are a few ways of looking that link was by CHD (BUT remember every CHD a child has is listed, so make sure who ever your reading about doesn't have alot of other things going on ) you also can read the portraits by treatment http://tchin.org/portraits/by_treatment.htm

 

[briansmom]

You PM'd me, but it was as a visitor and I couldn't respond.

You say you are moving to Dana Point - first you will love the area, so welcome to SoCal.

As for doctors, my son's surgeon is absolutely a saint - seriously deserving of a medal, but I don't think that he treats children. I will see if he has any suggestions, but I do want to say that CHOC (children's hospital of orange county) has a very good reputation. CHOC is about 30 miles north of Dana Point. I have MAJOR issues with Rady's Children's hospital in San Diego because they were the ones that misdiagnosed my son. I know they have a good reputation with young children - I just think they don't have a clue with adolescents.

Please stick with the folks on this forum, you will gain and immeasurable amount of strength from all of us.

 

[Lynlw]

I just rememberred who I was thinking of that is the closest and posts often Andrew'sMom

 

[mlkyle]

last dr visit

last dr visit

Dear Lyn,

The cardiologist said his BAV is working excellent...no regurgitation or stenosis. The scary news was that he had a bulge...the DR said it wasn't an aneurysm...a bulge at his aortic root at his sinus valsalva. His aortic root was at the high end of normal on his visit last Oct. This Oct it has dilated more...but still not an aneurysm. The echo tech said she has seen in children where the "bulge" will plateau for years at a time w/ no change...that is what I am hoping and praying for...

Thank you again for your insight and interest...I can't believe the sincere help I am receiving from this forum.

 

[mlkyle]

Thank you Deanne...

 

[ALCapshaw2]

Are you saying Katie is close to MLKyle's son? Katie has pretty complex CHDs and needed one of the repairs that needed a couple surgeries. I am trying to think of Who that post here children has something close.

I was thinking more in terms of age at first surgery, but even there I was in error. The more important info was the reference to Dr. Bove and UofM's pediatric unit.

Another Heart Mom is Emma from Portsmouth, England, UK.

Here is GIJanet's profile:

About gijanet

Surgery
Katie has had 5 heart surgeries: a Bt shunt at 2 weeks; Bilateral bidirectional glenn at 12 months; repair of common AV valve at 3 years; then our 2for1 heart surgery sale: valve re-repair & extracardiac fontan, then replacement of common AV valve a

Heart History
heterotaxy syndrome w/situs ambiguous, polysplenia, dextrocardia, malrotation of intestines, complete AVSD, DORV, BSVC, L-TGV, IIVC, PS, leaking AV valve

Medications
Captopril; Coumadin; Aspirin

Location
Arlington, Tx.

Interests
Marvin the Martian & the other Looney Tunes characters, Dora the Explorer, Strawberry Shortcake, My Little Pony, and the Sesame Street gang

Occupation
Have mastered my ABC's and have learned to read quite well.

Referral
CHD list

Signature
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

Katie and Janet are great examples of how mother can child can face the challenges of multiple Heart Surgeries and come up smiling thanks to the Highly Refined Art of Pediatric Heart Surgery.

As Nancy, the Grande Dame of VR.com says:

"Never Give In and Never Give Up"

'AL Capshaw'

 

[Lynlw]

Dear Lyn,

The cardiologist said his BAV is working excellent...no regurgitation or stenosis. The scary news was that he had a bulge...the DR said it wasn't an aneurysm...a bulge at his aortic root at his sinus valsalva. His aortic root was at the high end of normal on his visit last Oct. This Oct it has dilated more...but still not an aneurysm. The echo tech said she has seen in children where the "bulge" will plateau for years at a time w/ no change...that is what I am hoping and praying for...

Thank you again for your insight and interest...I can't believe the sincere help I am receiving from this forum.

Well, while is stinks that your baby has any heart problems, hopefully things stay as good as they are right now for maany years. IF it makes you feel any better, Justin's aortic root has been quite large for years, but never was an issue, actually that's one of the few parts that haven't needed surgery. Did I read you will be moving to Cal? I know a few Moms that have CHD support groups in different parts of Cal.

 

[ALCapshaw2]

Another Top Surgeon with Pediatric experience is Dr. Hillel Laks at UCLA.

Here is a link to his profile on the UCLA website:
http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=8068

When I researched him once before, I believe I found a reference that he had been Director of Pediatric Surgery at some big Hospital in the East (YALE Univ.) before going to UCLA. I'm not sure if he is still doing Ped. Surgery but with his background and interests, he should know the Top Pediatric Surgeons / Hospitals so would be a good reference source at the least.

EDIT: Here is a more complete history
http://www.rotary5280.org/clubs/santamonica/Meetings/2001-2002/lunch51702.htm

Here is a link to the profile for Dr. Bove at Univ of Mich
http://en.wikipedia.org/wiki/Edward_Bove
where he is Head of Cardiovascular Surgery
and Director of the Pediatric Surgery Unit.

I expect that GIjanet can supply the names of more Pediatric Surgeons.

'AL Capshaw'

 

[mlkyle]

Dear Lyn and Al,

If I could hug you two I would!!!!!! THANK YOU THANK YOU THANK YOU...FOR ALL YOUR WISDOM AND HELP. I AM SO APPRECIATIVE FOR THIS SIGHT...AND PEOPLE LIKE YOU...THANK YOU

JULIE

 

[Danny]

Julie, just hang around a while, and you will get more info than you can imagine. The people here are great! Ive only been here a few months, but these people prepared me for my surgery, gave me info on my condition, what to expect, support, and so many other things. You found a wonderful site.

 

[Lynlw]

Dear Lyn and Al,

If I could hug you two I would!!!!!! THANK YOU THANK YOU THANK YOU...FOR ALL YOUR WISDOM AND HELP. I AM SO APPRECIATIVE FOR THIS SIGHT...AND PEOPLE LIKE YOU...THANK YOU

JULIE

IF you don't mind travelling, the CHD Centers that ALWAYS rank 1 and 2 (BY quite a bit) are CHOP (philly) and Boston Childrens.They switch 1 and 2 after them the numbers usually drop quite a bit http://health.usnews.com/health/bes...ls/heart-and-heart-surgery-hospital-rankings/
The good thing is Most of the bigger CHD centers & surgeons have ALOT of experience with both the aorta and aortic valve, since many of the more complex CHD surgeries involve the aorta as part of the surgery, and they work on the aorta daily.

ps also like any other heart surgery, there are MANY different CHDs, (around 30) and many different surgeries, so even with more complex surgeries, depending on WHAT surgery you need, who /where has the most experience with THAT particular surgery can change. but a surgeon that has alot of experience in the fontan, switch for transpostion, Ross will have alot of experience with aortas and aortic valves.

 

[TXGal]

Julie, I know, it's so hard knowing our babies have a CHD. It was very hard hearing this news. Even though I have a CHD, I honestly didn't think that my son would have one too. Fortunately with BAV, the symptoms and problems don't commonly occur until much later in life, but it's still tough imagining my son one day having a valve replacement! I'll be praying that the bulge at your baby's aortic root gets better and that he won't have to have surgery any time soon!! If you need any support, you can bet I'm here for you.. I'm going to check this on my son's upcoming echo too. =)

 

[mlkyle]

thank you

thank you

Dear Kristen,

Thank you so much for your support. I am also here for you. Please keep me informed about your precious baby boys appointment. We are in this together...

Thank you again Kristen.

Sincerely,

Julie

 

[njean]

Dear Julie,
First of all, welcome to this forum but so sorry to hear of the circumstances that bring you here.

I can think of nothing worse for a parent than to know that something is wrong with their precious child. I pray that you find knowledge & great support from the wonderful people here & not feel alone in your anguish.

I will also pray that your precious little boy is years away from having to have OHS & continues to be well for a long, long time to come.

Take care!

 

[mlkyle]

thank you

thank you

Sweet Sweet Norma,

I thank you so much for your precious words. You must be a mommy b/c you summed it up so well...it is horrible to know the little life that grew inside of you for nine months and breast fed for twelve months and just love more than life will have to go through something I nor his father would ever dream of...

thank you again...this forum has helped reduce my fears and my tears...

thank you.

 

[njean]

Sweet Sweet Norma,

I thank you so much for your precious words. You must be a mommy b/c you summed it up so well...it is horrible to know the little life that grew inside of you for nine months and breast fed for twelve months and just love more than life will have to go through something I nor his father would ever dream of...

thank you again...this forum has helped reduce my fears and my tears...

thank you.

Thank you for your kind words my friend but I never was able to have children of my own unfortunately due to my struggles with my heart. But I am delighted to say, that I am a step-mom & step-grandma to my husband's great kids!

 

[mlkyle]

lucky kids

lucky kids

Well those are some lucky kids of yours husbands to have you in their life...thank you again...I'm sure we will be in touch.

 

[gijanet]

Julie..............

Julie..............

I just wanted to welcome you to the group, although I'm sorry you had a reason to find us. My ears were burning, Marsha and Al! Although Katie does not have BAV, she did have her valve repaired at three and her valve replaced at four. Katie is now eight, almost nine, and she is doing great, despite the coumadin. I do swear by Dr. Bove and he is our miracle worker, but we primarily sought him out due to his vast experience and success rate with very complex heart defects. You do have some great surgeons closer. I do wholeheartedly endorse Lyn's suggestion of getting a second opinion or two from one of the larger ped heart centers who generally do this for no charge. I sought out a total of five opinions for Katie before we decided on Dr. Bove. None of them charged us except for our local children's hospital. go figure! Good luck and keep us posted. Hugs. Janet

 

[mlkyle]

thank you

thank you

Thank you Janet for your info. on your precious daughter. I am so happy to hear she is doing so well.

I am sending copies of my baby Kyle's records to Dr. Bove and Dr. Laks at UCLA.

I also give you and your baby girl hugs.

Thank you again.

Julie