A Child with Mid Aortic Syndrome

[KimC]

Hello,

Has anyone heard of or had experience with Mid Aortic Syndrome?

An eight-year-old little girl at my daughter's school had what the local docs thought was the flu. Her parents disagreed and transferred her to a larger city hospital where they took her BP. I don't remember the diastolic, but the systolic was 250! She was in renal failure.

Her parents once again transferred her, this time to the Atlanta Children's Center (Egelston) where she is in the ICU under the care of eight specialists. They did an extensive MRI and discovered that their daughter has "Mid Aortic Syndrome," a rare congenital defect where the aorta narrows nears the juncture of the renal arteries.

Helen had Femorary artery bi-pass surgery last night. After five hours of surgery, she's doing well and our community is hopeful. If you'd like to post any helpful advice or tips for her parents, please do and I'll pass them along.

Best,

 

[KimC]

I just got another update on Helen -- she had triple bi-pass surgery. Unbelievable. The doctors think she lost her kidneys. She'll have to go back for another OHS in six months to bi-pass arteries that serve her lungs.

If you think it would help her mother, Sally I will direct her to our community or another that you may recommend. Please let me know your thoughts.

Thanks,

 

[Emma]

!!

!!

How terrible for the family!
It's bad enough to know your child has a CHD and to go through the surgeries with them but to have it thrown at you like that and for it to be that serious is heartbreaking!

I think I do know someone with that condition, I will email another site I'm on to find out and get back to you.

feel free to give her my email address if need be though - as one parent to another.

[email protected]
Emma
xxx

 

[gijanet]

Do you still need info on this?

Do you still need info on this?

If so, I will be happy to check my ped CHD group and see if anyone is familiar with this. Just let me know. Hugs. J.

 

[KimC]

Update

Update

Yes, please ... I think Sally, Helen's Mom would love support from other Moms facing similar crises. She's active on the Net, too. Please feel free to PM any info to me, and thank you for your wishes. BTW, her name is Helen Cardamone, and she has a Care Page, too!

http://www.carepages.com/UpdateListing?seed=418553

Here's a recent update from her mother. (Helen had triple bi-pass on March 28, and will have to go back for surgery on the arteries leading to her lungs in several weeks).


At 9:30 tonight Helen returned from a 5 hour surgery to repair the blood vessels in her lower Aorta which go to her kidneys, liver, gall bladder and intestines...the doctor connected three bypasses which began to supply blood to her organs....she had grown additional blood vessels over the past 10 years to compensate for the problem and allowed her to be so active..........Her prognosis is a cautious good one but clearly this was a complicated surgery.....The doctor says one in a million children has this condition....he has only performed this surgery 3 times......Your prayers have worked so far so keep it up.....Love, Helen's family....

 

[gijanet]

Will put some feelers out...........

Will put some feelers out...........

Yes, please ... I think Sally, Helen's Mom would love support from other Moms facing similar crises. She's active on the Net, too. Please feel free to PM any info to me, and thank you for your wishes. BTW, her name is Helen Cardamone, and she has a Care Page, too!

http://www.carepages.com/UpdateListing?seed=418553

...

and get back to you soon. Hopefully, Emma will, too, since this is so rare. Some good sites for Sally are listed in this thread. http://www.valvereplacement.com/forums/showthread.php?t=9940

But there are lots more running around out there. They will be in our prayers that things continue to improve. Talk to you soon. Hugs. J.

 

[Emma]

hiya Kim,

yep Janets right - I've copied your posts onto other sites I'm on and will let you know straight away if i get any replies. That poor family sound like they are going through hell! We're praying for them!

Emma
xxx

 

[Emma]

a reply

a reply

I received a reply from someone on another group and I'm afraid its not particularly postive but I'm sure each case differs anyway - as in most CHD conditions, however similar they seem.
Heres the reply I got..

Emma,
See <http://www.health.gov.mt/impaedcard/issue/issue9/0423/0423.htm>
http://www.health.gov.mt/impaedcard/issue/issue9/0423/0423.htm. I thought
perhaps Kawasaki group may be able to help, Emma, but looks more like the
kind of prob that arises with Takayasu's arteritis. I knew of one child in
the UK with this problem - in Northern Ireland, and I know she had a poor
prognosis. She may still be on the CHF database if you want to call them,

Hazel x

The CHF Hazel mentioned in her reply to me, was the Childrens Heart Federation and if you think it would be any help, I don't mind at all and will call them and try and get hold of this other family for you??

Emma
xxx

 

[gijanet]

Kim and Emma

Kim and Emma

I have not had a lot of luck coming up with anyone on this end. People are sending lots of prayers, but don't know anyone with this condition. I did do a search and came up with a little girl in the UK. I don't think it is the same one as Emma's as this little girl is thirteen and seems to be holding her own right now. Her mom is also looking for someone else to talk to. Might be worth it for Helen's mom to check it out. The little girl's site is:


http://www.midaorticsyndrome.org.uk/

Hope this helps and I will continue to search for someone. Hugs. J.

 

[KimC]

Thank you ... keep the prayers and well wishes coming. I'll pass on the info to Helen's mother. (I'll try to keep it positive). They've been through so much, all at once.