[tri-med] Re: Prenatal Diagnosis

This is a very thought provoking question and it took me some time to decid=
e what I really thought, and to remember how I felt before Morgan.  I reall=
y feel like the lyrics from that song by Joe Nichols, "I've learned to neve=
r underestimate the impossible."  Before Morgan was born it was "impossible=
" that I would have a child that was different from all the other children.=
  I never thought about it, never expected it.  It's not like I even was in=
 denial that these things could happen (when I was in high school I babysat=
 for a boy much like Morgan), but they didn't happen to me. =20

Now, immediately after I found out I was pregnant I also learned that there=
 was another family member with a child with t18.  I didn't know much about=
 it, didn't care much (other than that I cared about the child), and wasn't=
 even curious about it.  When this family member told Mike he should be tes=
ted to see if he was a carrier (Mike's niece has an unbalanced translocatio=
n, like Morgan.)  Now, I'm totally confused about what to do.  I tell my o.=
b. about it and he is not concerned, but does suggest we see a genetic coun=
selor.  When we go to this other office we think we are seeing a genetic co=
unselor.  This dr. tells us there is nothing to worry about, t18 is not inh=
erited.  Mike insists on a blood test even though the dr. doesn't think it =
is necessary.  The dr. is recommending checking back in 3 mos. for an u/s. =
  But Mike convinces them to do the blood test.  When the test comes back p=
ositive for Mike having a balanced translocation we are shocked.  We also f=
ind out that the "genetic counselor" we saw was not one at all, but a perin=
atalogist.  My o.b. did not realize that the genetics person at this other =
office had left.  So, at this point we opt for an amnio.  Mike feels we don=
't need to do it because it doesn't matter what the results are, we will ca=
rry to term.  I want to know!  I need to know what we are facing.  At this =
point I am afraid, but not searching for any type of answers or information=
.  I do remember thinking I didn't want my baby to be like Mike's niece.  I=
 am telling you all this because it is true, I didn't want a baby that had =
so many problems. =20

When the amnio results came back positive for an unbalanced translocation I=
 was devastated for about an hour.  At this point the only information I am=
 interested in is the facts.  But, the facts in our situation were quite di=
fferent.  I knew that Mike's niece was living and was 6 mos. old.  (There w=
as no support there from that family, but that is another story that does n=
ot go here.)  When I was told Morgan wouldn't live I just let it roll off m=
y back thinking about Mike's niece.  So, at some  point my perspective had =
changed, now it wasn't that I didn't want a child like that, it was that I =
wanted my child to live. =20

We did not have access to a computer, this was 1997, ( I know, we were in t=
he dark ages), and the drs. never gave me any information other than what t=
hey told us they read.  I didn't even think to ask for anything.  We were n=
ever refered to a geneticist so we didn't know much.  We were told that Mor=
gan appeared to be doing well in utero, but that didn't tell us anything ab=
out how he would do once he was born.  That was about the best info. they c=
ould give us. =20

 Do I wish I had known more?  No, I don't.  I had enough information to mak=
e the right choices for Morgan, but with all the info. that has come since =
I have lost a sense of innocence.  There are times when I just wish I had n=
ever heard of t18 or any of the other syndromes.  Sometimes I feel like I k=
now too much.=20

"You must do the thing you think you cannot do."   Eleanor Roosevelt

Holly --  wife of Mike, mom of Morgan (8 yrs.), partial t18q & partial mono=
somy 9p (unbalanced translocation)
mommy to Clyde (gray kitty)

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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