I'm happy that you have asked me to assist you with your child and hope that you can benefit from my many years of helping parents like you.

Has her doctor given her condition a name?

This is a rare condition called Hemihypertrophy and I'm surprised her doctor has not made this diagnosis in her 9 years.

Great for her but she needs a definitive diagnosis and then appropriate evaluation by a number of specialists if she indeed has hemihypertrophy (orthopedists, geneticist, neurologist, etc.).

Here is a website that is excellent and written for parents and patients with this condition. I would encourage you to review this and then ask for a referral to a specialist, even if she needs to go to another island or country to do so. As you can see from this website, there are many complications, some of them life-threatening, that need evaluation and management.

http://www.hemisupport.com/

She at least needs an ultrasound of her abdomen to look at organ growth as well as xrays of her arms and legs to accurately measure discrepancies.

Her doctor should be able to do this even if a geneticist is not available and then referral to an orthopedist and other local specialists perhaps there on your island.

The main thing is that delaying any longer in making this diagnosis (or perhaps not!) could be very harmful to her.

I suggest that any major children's hospital can do this evaluation, such as in Florida or Texas. I am most familiar with the centers in Texas such as University of Texas at Galveston, Houston or Dallas as well as Baylor Medical Center an Texas Children's Hospital in Houston.

Yes, as that is likely the closest center to you.

I would use their online contact form at this link to make contact:

https://www.mch.com/contactus/index.aspx?topic=Orthopaedics&anchor=top&

Or the genetics department at this address who might best coordinate her evaluation:

http://www.mch.com/page/EN/493/Medical-Services/Clinical-Genetics.aspx

Here is a link to the genetics page that mentions "dysmorphology", which is the general term for this condition:

http://www.mch.com/page/EN/2299/Clinical-Genetics/Specialty-Programs-and-Clinics.aspx

Good luck to you and your daughter and if you have any further questions, even after you hopefully accept my work here so far, you may return to this conversation later at NO additional charge.

Please do and thanks for clicking on the accept button as that will free me to return to the main message board to assist others.