I am looking for a surgeon who can help my 1 year old infant. She was
born with and enlarged middle finger - right hand . It is called
macrodactyly. She has already had two surgeries by Dr. Christian
Sampson in BostonChildren's Hospital
Neither were very helpful.  I would like to also to speak with other
parents who have had this done.  Im sure it is very rare,though

I am sorry to hear about that. I have located the nest information
that I can on this subject. If these are nothing like what you are
looking for let me know. And I will see if I can find more on the
subect.

Story about a girl who had macrodactyly on her foot.
http://news.bbc.co.uk/2/hi/health/3604796.stm

Doctor in California who Is very knowledgable on the subject.
http://www.saintfrancismemorial.org/index.asp?catID=ps&pg=jointcenter_doctortscv

Proteus syndrome foundation
http://www.proteus-syndrome.org/index.htm

Please Note: Additional information on this disease may be available
from the Genetic and Rare Diseases Information Center (GARD).
Information specialists can provide for free assistance in obtaining
the information you need. GARD is supported by the Office of Rare
Diseases in partnership with the National Human Genome Research
Institute, both of the National Institutes of Health. GARD can be
reached at 888-205-2311, 888-205-3223 (TTY), or by e-mail
GARDinfo@nih.gov.
http://ord.aspensys.com/asp/diseases/diseaseinfo.asp?ID=8529

Another story of a child with macrodactyly
http://www.texnews.com/1998/1999/local/baby0706.html

The Department of Plastic and Reconstructive Surgery at Good Samaritan
consists of a distinguished group of plastic surgeons who have been
trained in some of the finest programs in the country. These
physicians evaluate and treat any physical deformity that can be
corrected by surgery, whether acquired or congenital. The Department
works in collaboration with other specialties at Good Samaritan to
offer total patient care. A plastic surgeon is on call twenty-four
hours per day to respond to emergencies and trauma that may require
their expertise. These specialists provide excellent treatment in
immediate reconstructive surgery of injuries and in the closure of
soft tissue wounds.


http://goodsamaritan.chsli.org/services/detail/Plastic_and_Reconstructive_Services.html

I would look into some foundations as well as within your community
for donations. Distributing jars to collect money in is a good idea
along with asking your church if you attend for some donations. You
could also contact companies and request doantions. To increase your
chance of recieving donations it is always a good idea to spread the
word. And if you can get your local press involved that would be
great. As I assume considering the prices of these operation, that you
may need some help with the finaces of this.

I found an interesting article from Complejo Científico Ortopédico 
Internacional ?Frank País?, Ciudad de La Habana, Cuba. This article
describes a succesfull treatment to a baby of 8 months with a similar
problem that you describe for your 1 year old infant.
Unfortunately the article is in spanish, but I am pretty sure that you
will find someone who can translate it to you.


The article is:
"Transposición digital en el tratamiento de la macrodactilia":
http://www.bvs.sld.cu/revistas/ort/vol16_12_02/ort11202.htm

The info that I found that would let you contact these doctors is:

Complejo Científico Ortopédico Internacional ?Frank País?.
Ave 51 No. 19603 entre 196 y 202. 
La Lisa, Ciudad de La Habana, Cuba.

Prof Dr Rodrigo ALVAREZ CAMBRAS
Calle 18 no. 505,entre 5ta y 7ma,
Playa HAVANA
Fax: +53 (7) 201 9496

See also this page that gives an email address for Dr Alvarez Cambas:
http://www.excelencias.com/articulo.asp?rev=ex&edc=Esp2_Ing&art=716

Try also to contact Servimed, they offer medical services for foreigns
in Cuba, and they could contact you with the "Frank Pais" Complex:
DIRECCION GENERAL:
Calle 43 No. 1418 entre 14 y 18; 
Miramar, Playa, Ciudad de La Habana, CUBA
Teléfono (537) 24 4811-13
Fax: (537) 24 1630; 24 2948

DIRECCION DE TURISMO DE SALUD.
Calle 18 No. 4304 e/ 43 y 47; 
Miramar, Playa, Ciudad de La Habana, CUBA
Teléfono (537) 24 2658; 24 2023
Fax: (537) 24 1630; 24 2942


I hope that this helps you in your research.

Hi again!!

In the article mentioned in my previous comment there is a Summary or
Abstract in English:
"Summary 
The case of a patient suffering from progressive macrodactyly of the
third finger of the right hand diagnosed at birth without hereditary
or teratological antecedents is presented. Surgical treatment
consisted in the ray amputation of the third finger of the right hand
and transposition of the index finger to the base of it by Peacock?s
modified technique. Consolidation was attained 4 weeks after surgery.
She was able to make all the movements of the fingers with maximum
amplitude at 9 weeks. There were no postsurgical complications. On the
18th month, she had no relapse and she carried out all her activities
with excellent strength and precision in the movements."

Wow!  I was happy to see your posting.  My 2 1/2 year old son also has
macrodactyly of his right hand.  He had two fingers separated at 5
months, and now he is going to have to have his middle finger
amputated.  We are now consulting with Shriners Hospital in Portland,
Oregon.  My husband and I would also like to speak with other parents
who have gone through this, or are experiencing it.  We are holding
off on the surgery until we can get a second opinion and also speak
with other families.  I know, however, that it will have to be done. 
Although his middle finger is by far the most affected, his index and
ring finger are also somewhat enlarged.  Our doctor hopes the
amputation will also help these fingers to cease growing so large. 
Please e-mail me.  I look forward to speaking with you, and so does my
husband.  Thank you, Kimberly and Michael   kmboys2@msn.com