[ Post a Response | 22q Deletion Interest Board ]
Posted by Kami
on 9/12/2008, 2:01 pm, in reply to "Just found out"
71.38.94.203
Leah,
I just had the same thing happen with my baby boy who is only a week old. Out of nowhere they said he has TOF and must have open heart surgery. I didn't drink, do drugs, or do anything at all and was very careful during my pregnancy. It is just devastating and horrible. All I can do is take it one day at a time and enjoy my son as much as I can. It is so hard, but you can get through it. I think the initial shock of the diagnosis of a 22Q deletion makes it hard to eat, think, sleep or even talk about it. No one in my family or my husband's family has any medical conditions and our other two children don't have any heart or other chromosomal deletions. Our cardiologist and pediatrician said sometimes it just happens. I am young, too, so this was really hard to take when all of the literature states it is common in women over 40. I don't think I will ever know why my baby has to live with this and why I have to grieve and feel so horrible about it, but all I can do is love and support him through it. I hope you and your family support each other during this difficult time. Take care.
--Previous Message--
: hi
: my 9 month old daughter has just
: been diagnosed with Q22 deletion,
: and I am just devastated, I have no
: idea hw I am going to deal with
: this, I am just so scared. I am only
: 23 and my whole life I have grown up
: with my sister who has an
: intelectual disability but do not
: know the medical name for what she
: has, and just seeing her, how she
: is, I just don't know how I'm going
: to deal with it if my daughter is te
: same way. My mum refuses to get her
: tested in fear she will have it and
: she does not want to be blamed for
: it, but this will determine weather
: or not my fiance and I have more
: children.
: I'm just so scared, my daughter is
: reaching all her milestones and many
: doctors say they she looks like a
: normal looking baby and you wouldn't
: even know jus by looking at her that
: she has something wrong with her.
: I'm just scared of the unknown, its
: just a big waiting game at the
: moment to see how severe its going
: to be.
: And the thing that pisses me off the
: most is that during my pregnancy
: with her I did everything perfect, I
: exercised ate all the right foods,
: did not have not one bad piece of
: food, not one coffee, not one drop
: of alcohol, I don't take drugs so
: theres no need to mention that, di
: not have one painkiller such as
: panadol or nuraphen. I just did all
: the right things and still shes not
: right. I was stressing so much that
: I did everything right because she
: wasmy 4th pregnancy, I had 3 prior
: misscarriages before her and they
: did all teting to find out wh and
: there was o reason, everything
: looked normal with my cells and
: chromosomes.
: Just don't know what to do from
: here, plus I live in a small mining
: town in the middle of no where so
: theres not much support here and we
: have no family up here so its a bit
: hard. Please someone respond with
: some encouraging words.
: HELP!!!
:
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