Syndactyly

Parent Q&A

Child with Syndactyly May 11, 2021 (7 responses below)
Child with Syndactyly Mar 21, 2021 (0 responses below)
  • Child with Syndactyly

    (7 replies)

    Hi There,

    Posting again as we got no bites the first time...

    We are looking for any families out there with experience with syndactyly. We have a 1 1/2 year old with 2 fingers completely connected on one hand and 2 fingers on the other hand with a high webbing. We'd like to hear about deciding to have surgery vs not, when to do it, to include the child in the decision, recovery, etc. 

    If you are open to sharing your experience with this, please let us know.

    Thanks! 

    Juliana and Seph 

    RE: Child with Syndactyly ()

    I don't have a personal connection to anyone with syndactyly, but you might check out the disability studies scholar Rosemarie Garland-Thomson (e.g. her essay "My 'orphan disease' has given me a new family") who has complex syndactyly for ideas https://www.nytimes.com/2017/10/26/opinion/my-orphan-disease-has-given-m...

    RE: Child with Syndactyly ()

    Hello there. I just saw this post and my heart got all excited! My daughter was born with Ectrodactyly with 3 fingers on each hand, 3 toes on her right foot (we had one amputated due to the lack of bones) and 4 on her left (2 are webbed). She is now almost 9 years old and has had about 7 surgeries to close clefts, etc. She is one of the most resilient, athletic, adaptable kids I know. Feel free to reach out via text or phone. I would be more than happy to answer any questions that you have.

    Danielle

    925-457-7850

    RE: Child with Syndactyly ()

    My daughter was born with a small sixth finger on each hand. She had surgery to remove it at six months old (rather than the binding method at birth, which was what was done to her paternal relatives with the same issue, which leaves a bump). The surgery took about 20 minutes. She was in recovery for about 90 minutes from general anesthesia. Then we went home and she had bandages on her hands for about a week. We never considered any other course of action and everything went fine. We had this done at Children's Hospital Oakland.

  • Child with Syndactyly

    (0 replies)

    Hi There,

    We are looking for any families out there with experience with syndactyly. We have a 1 1/2 year old with 2 fingers completely webbed on one hand and 2 fingers on the other hand with a high web. We'd like to hear about deciding to have surgery vs not, when to do it, to include the child in the decision, recovery, etc. 

    If you are open to sharing your experience with this, please let us know.

    Thanks! 

    Juliana and Seph