Hi Marisa,

I see this has been a while and I am sorry I didn't get you this info
earlier, but my daughter Faith Marie was born September 1, 2004 with an
11q deletion and HLHS. She went thru a cranial surgery to correct the
metopic closing early. It was an extremely difficult decision to make
since we were being told it was more cosmetic than anything. In our
case it seems since the surgery that it was causing more problems then
what we were led to believe. We are happy with the results. However,
the surgery itself was hard for us the parents. They swell up to the
point they cannot open their eyes and it breaks your heart to see them
like that. Faith actually would not look at Jana or I for about a week
and a half after we got her home. As always with these special kids,
make sure they have plenty of blood products on hand.

Take care,

Jeremy (Orlando, FL)


--- In 11q_disorders@yahoogroups.com, "feeleym65" <feeleym@...> wrote:
>
> Hi.....my name is Marisa Feeley. I live in Dacula, GA with my husband
> and 3 boys. My youngest son, Noah, was born on March 27 06. He is 8
> months old now. He was born with an unbalanced translocation of
> chromosomes 3 and 11(passed on paternally). Its a 3 duplication and 11
> deletion. I am wondering if there is anyone else who may have this
> same combination. I am also looking to communicate with anyone who is
> dealing with feeding difficulties, trigonocephaly, VSD, glaucoma and
> severe hearing loss. My husband and I are currently making a decision
> as to whether we should move forward with cranial surgery to correct
> his metopic synostosis. Is there anyone who is familiar with this and
> what helped you decide on going through with it?
>
> Thanks!
>
> p.s. Linzee we spoke on the phone a while ago. Hope to talk to you
> again soon.
>