[ Post a Response | 22q Deletion Interest Board ]
Posted by candice
on 9/11/2009, 12:08 am, in reply to "Re: Just found out"
96.52.216.230
My 3 year old son and i both have 22q and were both diagnosed with it after he was born. He was the lucky one though.. other then only needing a feeding tube for 2 years to help with feeding ( which has since been removed) hes been pretty healthy. I on the other hand have had open heart and 2 spinal surgeries as well as a cleft palate and chronic fatigue and pain. Finding out that i have the Deleation as well made it easy for my husband and i to decided that we were not having any more children naturally but i feel guilty about passing it on to my son unawares. But with both of us being healthy now and happy i wouldnt have it any other way. Things do get better. Just be patient. and make sure you have lots of support.
--Previous Message--
: 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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