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16-month old baby with CAVC and MV replacement needs urgent help!

My friend's baby girl, born on June 6, 2009, was diagnosed CAVC (Complete Atrioventricular Canal defect) when she was 35-day old in China.  She accepted two main surgeries at the age of 3 and 6 moths respectively.  But it didn't solve her problems and her life is in danger now.  The following is her medical record:

1. Accepted CAVC radical surgery on 2009-9-21.  After the surgery the ultrasound showed that the atrial septal was repaired well without shunt.  Slight mitral stenosis, mild mitral valve and tricuspid regurgitation.
2. 2009-12-20 she had left ventricular failure and was confirmed severe mitral stenosis.  Mitral valve replacement was done on 2009-12-27.  But since the doctors cannot find the appropriate size of the artificial mitral valve, size 17 aortic valve was used . The medication after discharge: warfarin, spironolactone, capoten.
3. The follow-up ultrasound on 2010-7-4 showed severe left ventricular outflow stenosis.
4. The follow-up ultrasound on 2010-10-11 showed a narrow left ventricular outflow(severe), and left ventricular hypertrophy.

The patient baby presents clear consciousness, normal diet and activities.  Height 75cm, weight 8.5kg. Oral drugs: warfarin(1.5mg), spironolactone, Capoten, metoprolol.  Latest INR is 2.39.

The conclusions made by the local pediatricians and surgeons are:
1. LOVT is related to the replaced mitral valve extrusion.
2. Pulse pressure 84mmHg, may causes sudden death;
3. Since the patient is too young and her weight gain is not obvious, the valve ring size is estimated not to change since the MV replacement.  No smaller valve available even if accepting surgery.  Close observation is suggested.

Question:
1. Are there any artificial mitral valves smaller than size 17 available in US or Canada or Hongkong?
2. Does she need immediate surgery?  What is the consequence if the 3rd surgery is postponed?
3. Can any medication or stent solve or alleviate her current severe narrow ventricular outflow problems?

Thanks a lot!
4 Responses
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367994 tn?1304953593
For some insight and has a complete atrioventricular canal surgery happened? Usually within the first two or three months of life, the surgeon will close the large hole with one or two patches. The patches are stitched into the heart muscle. As the child grows, the tissue grows over the patches.

The surgeon will also separate the single large valve into two valves. The surgeon will reconstruct the valves so they are as close to normal as possible, depending on the child's heart anatomy.

You can contact the following medical center that is highly regarded by almost all standards within the medical community, and they can provide specific answers to your baby girl. https://my.clevelandclinic.org/webcontact/webmail.aspx.

Hope this helps, and I wish your baby well going forward.  I know it is a difficult time for you and your baby.  Take care.
Helpful - 0
212161 tn?1599427282
praying for your sweet baby girl
Helpful - 0
Avatar universal
Thank you kenkeith.  I posted my question to the padiatric heart forum but no answer so far.  If you have time, can you just tell me your answer roughly?  Thanks a lot.
Helpful - 0
367994 tn?1304953593
I would like to answer your questions, but qualified pediatric doctor would be better able to help with information.  There is a pediatric doctor available, and if you scroll down to the expert forums on the right side of the screen, you will see the expert forum.  Thanks for you question.
Helpful - 0
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