Down Syndrome
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Down Syndrome
Sept 2008
I am helping a friend who is 5 months pregnant. Her baby has Down
Syndrome, and she is looking for a good general Pediatrician who has
specialized knowledge/experience regarding relevant health issues.
She lives in the Concord/Walnut Creek Area.
lg
Try Dr. Tracy Trotter in San Ramon. Dr. Trotter has worked with
many patients with Down Syndrome. I am sorry I do not have the
number. Good luck.
Anonymous
I don't have a specific recommend for a pediatrician, but you
will probably need to work with a Lactation Consultant. Babies
with Downs are usually born with ''low tone'' and have a hard
time latching to the breast. I Highly recommend calling Charity
Pitcher-Cooper (415-462-8004) in advance of the birth. We had a
client with a Downs baby last year. Charity came to her home,
gave lots of good information. They went from finger feeding to
breast within a month. That baby is almost a year old & still at
breast.
Deborah S
March 2007
My husband and I are expecting our first child in June and recently
learned our baby has Down syndrome. Any advice for finding a
pediatrician who has worked with babies with developmental
disabilities--or is willing to learn--would be welcome. We live in
Vallejo and would prefer a doctor close to home, but are also used to
driving into Berkeley.
Julie
I have a 10 year old son with Down syndrome. His pediatrician is
Myles Abbott at East Bay
Pediatrics in Berkeley. We LOVE Myles and he has been wonderful to work with. He is not an
expert in Down syndrome, but he knows a lot and is willing to learn and explore anything
that he isn't familiar with. Most importantly, he is respectful to both me as a parent and
my child. Feel free to contact me if you have more questions about Dr. Abbott or about
parenting a child with Down syndrome. jennifer
March 2007
I am 35 y.o. and 17 wks pregnant, and just received news
that my AFP screen came back positive for increased risk for
carrying a Down Syndrome baby. I have an amnio scheduled on
Monday but the result will take two weeks. When I got the news
I was devastated and feared the worst. I have two healthy
children (ages 3 and 1) and worry about the emotional and
financial strain a disabled child would have on our entire
family. I feel I would have to quit my job to care for the
child properly, and my husband would have to work longer hours
and stay in a unfulfilling higher-paying career in order to
provide financially for the special needs and long-term care.
I worry about not being able to protect the child from the
stares and whispers, and about who would care for the child
after our death. Everything I envisioned for myself and our
family changed in an instant.
If I knew before becoming pregnant that my third was going
to have Downs, I would definitely have stopped at two children.
However I have already been feeling kicks and know the fetus is
fairly well-developed at this point, and although I am pro-
choice I have personal reservations about terminating a
pregnancy at 19-20 weeks. I have never had an abortion
before. I feel pressure to decide now what we will do when we
get the results because we would need to act quickly if we go
that route.
My spouse favors terminating the pregnancy if the amnio is
positive but would defer to my decision. I just don't know. I
think I would feel deep regret either way-- but which would be
worse? Any insight from those who have been in this position
and went one route or the other would be appreciated.
Anxious pregnant momma
Hi,
I had a difficult pregnancy and was told my fetus had very elevated
risks for numerous things and underwent an amnio.
Luckily the amnio showed no chromosomal abnormalities. However, I would
have terminated if it had. My feeling is that life will deal you enough
unexpected blows and tragedies- why start out with a difficult
situation? Especially when you have little trouble conceiving.
-anonymous
The AFP has so many false positives! Wait for results from your amnio
and try to relax and enjoy in the meanwhile.
anon
Hello,
Boy, do I feel for you! I went through almost the same thing a few years
ago. I was 35 and my AFP came back flagged for DS. I also had an
ultrasound that was abnormal and flagged as indicative of DS. I
agonized, cried, and prayed, as I imagine you are doing now. After the
amnio, we waited and, thanks to G-d, everything was totally fine. What
was told to me afterward is that all the stuff prior to the amnio is
simply based on statistics. It's not necessarily as personal or specific
to you as you would think. Once you're 35, what would be normal for a 25
year old somehow screams 'high-risk' to doctors. They call 35 'advanced
maternal age' for goodness sakes!
Think clearly about everyone in you or your partner's extended family.
Is there a real hereditary component of Down's? If no one has it, your
chances are quite good. For what it's worth, the genetics counselor we
saw prior to the amnio admitted she didn't even think I needed the amnio
based on her questionnaire, AFP notwithstanding. They get a *lot* of
false positives, and you have to check out even the tiniest
irregularity.
I get so choked up looking at my amazing child and remembering how I
almost made a drastic choice out of fear. Knowing her now, I would
regret having had an abortion even if she'd had Downs after all, and
make no mistake, I am definitely pro-choice. It's nothing anyone can
choose for you, but my advice is to have hope and be stronger than you
think you can be.
It makes you a more compassionate person afterward, no matter what. I
know that, silly and shallow as it may be, I feel a certain kinship with
DS folks and their parents who loved them enough.
anon.
I also ''flunked'' the AFP test 7 years ago. Remember the moral
conflicts as well as the anxiety about waiting to get to the amnio and
beyond. Several things--first, your risk of having a Downs child is
still pretty low--my 7 year old daughter is a normal, healthy child, as
are her 2 younger siblings. Second, you need to ask the group doing the
amnio if they can give you the ''instant'' results''. There is a test
you can pay for (most insurance won't) that gives you results within 24
hours v. 2 weeks. As I recall, they take a few cells, spin out the dna,
and are able to give almost certain results. This was a life- saver
emotionally for me. I cannot imagine what the 2 week wait would have
done to me. Finally, I have several acquaintances who have terminated
their pregnancies and they seem fine with the decision. Have another
friend who opted to keep the baby and they consider her a gift from
above. I have two friends who passed AFP; no amnio; delivered Downs
babies (both moms 34 yrs. at the time) and for both, it was if a
nightmare. So, while scary, I think those of us who fail are lucky to
have either advance notice or a false positive, versus those who got
false negatives and expected a ''normal'' baby and are surprised by a
special needs child. Good luck and hang in there! But please insist on
having group who can provide the fast results test. Two weeks during a
40 week pregnancy: an
eternity!
fellow test flunkee
I could write for a couple of pages here, but i will keep this short. I
have 2 wonderful children the second of which is an amazing little 21
month old who has Down syndrome (not a Downs child, a child with Ds).
It was a surprise to us as our AFP and U/S were all ''normal''. First,
an abnormal AFP does not mean your child has T21 - it's a screening and
it gets a lot of false positives and negatives - chances are your baby
has 46 chromosomes. Secondly having a child with Ds does not mean you
have to quit your job or have huge financial burdens. EI covers most
everything you need. I know lots of working moms with kids with Ds.
Being pro-choice means having a choice one way or the other. The other
day i was thinking i was so glad i didn't have a CVS because i wouldn't
know the wonderful person that is my daugther. She is a great addition
to our family and not a burden in anyway, in fact she is a gift to us
and her siblings. She has changed me (and all of us) in so many
positive ways. Instead of stares, she has opened up an entire wonderful
community of people to us, and made us closer to
people in our lives. There is a true pre-conception and
prejudice which i really fell is perpetrated by people who don't know.
Ds is not all gloom and doom!!!! Feel free to email me with any
questions.
archiepug
If you decide to keep the baby, I'd suggest you spend some time around
people with downs syndrome, if you haven't already. My older brother is
developmentally disabled and so I grew up around people with
developmental disabilities including his friends, classmates, co-workers
and housemates. I've also worked at a preschool for kids with dev.
disabilities and at Creativity Explored, an art center in SF for artists
with dev. disabilities (this would be a great place for you to visit
and/or its sister organization in Oakland, Creative Growth). Across the
board the people I've known with downs syndrome have shared a quality of
true sweet-heartedness, some of the most affectionate and genuine people
you'll ever come across. I also don't want to romanticize disability and
as a sibling, I can tell you that it is a hardship on the family and on
some level it can take away from the other kids when you have one who
demands so much. But no family is perfect and every person I know can
point to some form of disfunction (or at least difference) in their
family. I can also say that having had a brother with a disability has
made me a more sensitive and compassionate person and for that I am
grateful. I am actually closer to my disabled brother now (as
adults) than I feel to my non-disabled brother. I can't imagine my life
without him. Of course you know yourself and your family and what you
are up for. I sympathize with your disappointment and grief at not being
given the child you imagined. I think I also would be heartbroken. But I
also want to let you know that if you do go through with the pregnancy,
you and your family will ultimately be OK and will find the good amidst
the challenges.
Elizabeth
I am the mom of three wonderful kids, one of which has a genetic
disability with many characteristics similar to Down syndrome. We did
not know until he was born that there was an issue, so I never faced the
decision you are dealing with.
I will start by saying that I absolutely love and adore my son and that
this topic (''if you had known what would you have
done?'') is one my friends and I discuss from time to time.
I'll be honest, if I had known his diagnosis ahead of time I would have
aborted. But if I had know what our life would be like today, I don't
know what I would have done. It is not an easy decision even this many
years later.
My son's disability has definitely changed our lives. The financial and
emotional burdens are real and stressful. I don't work, and don't think
I could possibly at this time. Having a child with a disability (and
two others!) is above all time- consuming. Even when things are going
well, I am constantly managing therapies, advocating, dealing with
paperwork and insurance, making and going to doctor appointments, etc
etc. It is very hard to balance the needs of the other kids, a spouse
relationship, and my own needs. I don't feel like I can let up, because
the things we do have made a big difference for my child. He really is
doing very well, brings us great joy every single day, and most
importantly, he is really happy. I am still scared about the future and
what lies ahead but not in the panicky way I was when he was born.
I too worried when he was born about the whispers and stares, but for
the most part, the community has been incredibly accepting. (I have also
gotten good at avoiding or ignoring those that are not!) I have met
wonderful people -- therapists, teachers, parents of kids with
disabilities (who I now consider almost family), and people in our
neighborhood and schools who are compassionate and have embraced us with
all of our quirks. My life is more meaningful now and I truly love the
people who are in it.
Trust yourself to make the best decision for you and your family. It
will be a hard decision either way, and don't hesitate to get help (like
from a therapist) to make the decision.
Wishing you the best,
anonymous
It's really unfortunate that the test to determine some birth defects or
situations such as the one you are in, are done so late into a pregnancy
...
I can only share the experience of two friends; in high-school, a
classmate had a sister with Down's Syndrome and she told us how much the
whole family (there were 12 of them) loved this child and how their only
concern was that their sister be taken care of in case she outlived them
(she was the youngest). Then a friend who was happily expecting her
first child, only to have the amnio come back with Down's - she chose to
abort - it was very difficult for her and I don't know if you have
shared your pregnancy with others yet - she did say she would next time,
not say anything because it is such a personal, heartwrenching decision.
That said, I don't think anyone who cares about you would judge you one
way or the other.
anon
I do not have advice to offer on this intensely personal decision, but I
recently read a very moving book on this topic which could provide you
with input. It narrates the perspective of women who decided to keep
their babies. It is not a blanket ''pro-life''/anti-abortion book, but
is rather a collection of very poignant personal stories from women who
decided to keep their babies (and, I should add, who are happy with
their decision). I have no personal agenda in this regard -- and do not
know what I would do if faced with this decision.
But I just wanted to pass on this resource. Here is an excerpt from the
back cover in case you are interested in reading
it: ''Defiant Birth'' (Melinda Tankard Reist) tells the courageous
stories of women who continued their pregnancies despite intense
pressure from doctors, family members and social expectations. These
women were told they shouldn't have their babies because of a perceived
imperfection in the child, or because their own disabilities do not fit
within the parameters of what a mother should be. In the face of silent
disapproval and open hostility, they have confronted the stigma of
disability and had their children anyway. Some of the writers tell of
grave misdiagnosis, other of life-changing experiences, discovering the
joy and love in children considered unworthy of life...''The stories of
defiance in this book challenge our general notions of what is a 'good'
mother, and what makes for a 'happy' baby. They lay bare how simplistic
-- even dangerous -- are offers of 'choice' when society limits the
childbearing options for women and judges anyone less than 'perfect' as
potentially disposable'' -- Dr Abby Lippman, Board Chair of Canadian
Women's Health network. ...''This well-documented and compelling account
of the pressure faced by women expecting disabled children calls for
every child to be welcomed and loved, and deserves to be heeded by a
very wide readership.'' -- Allison Davis, UK disability activist, author
of ''From Where I Sit'' and founder of No Less Human.
Humbled by the Immensity of the ''Choice'' we are Offered.
There is a book about a family in this dilemma. It's called ''Choosing
Naia'' and I think it's at the library. I know it's at Amazon. They
struggled hard and at times chose termination but they ended up not
doing that and had the child, even though they did sometimes panic or
despair. I imagine the reflection and research they did would be really
helpful to you right now.
check it out
Wow- I can sure feel your pain! I went thru a simular situation with the
AFP test. First I must say that this test is FULL of false readings. I
know from personal experience. My first child had a normal AFP result
and guess what- She has Down Syndrome.
My second child had a very high indication from the AFP of having Down
Syndrome and so I had amnio and guess what-No Down Syndrome. So I have
no trust in the AFP whats so ever and amnio is the way to go if you want
a accurate picture of what is going on with your baby.
That being said I have to add that my daughter who has Down Syndrome is
the light of our lives, she is in high school, has friends, a part time
job, loves to dance and swim, is smart and headed for a great future.
She has been more ''normal'' than not and has not been any more
expensive or demanding than any other child without special needs.
Good luck with your pregnancy.
Mary
We were in a similar situation many years ago, but it wasn't Down's. We
decided to terminate the pregnancy. I know that will sound horrible to
some people reading this, but rest assured it was a very difficult
decision. I have mostly told people that the there were problems with
the pregnancy and left it at that.
We had a child that was just over a year old at the time. We had our
second child about a year and a half after we terminated the pregnancy.
I do not regret my decision at all. I would never ever tell a person
what to do in this situation, but I am sharing my situation so you know
that you will get past this should you decide to terminate the
pregnancy. Also, because I don't know you personally, I can't say what
your level of grief will be. I was more consumed with it that I thought
possible, but after a few months, I knew i had made the right decision
and started to moved forward with no regrets.
One last thing, my husband deferred to me as well, which is kind but it
also puts a lot of pressure on you. Really discuss this with him and be
sure it is a joint decision.
If you go through with the pregnancy, you will need his support in
raising a Down's baby. You don't want him bitter because he wanted to
terminate the pregnancy.
Good luck.
Been There
That AFP test should be OUTLAWED! God, I hate that test, I tell everyone
I can, do not take it. It gives 99% false positives and sends parents
like yourself in a spiraling, emotional freefall. I think half my
friends have had a positive on this test and everyone's kids' are fine.
I believe the medical establishment gives this out, not caring how many
people it messes up because if they can catch that 1%, they hope you
will have an abortion, so they won't have to foot the bill for a child
that is born. As you can probably guess, this happened to me and if you
can, I would try and get in to do an ultrasound, which is probably what
they will do before the amnio. It will tell you alot. Down's babies
have many physical anomilies that they can see in an ultrasound; less
soft spots, shorter limbs, flat back of neck, shorter neck, bigger
tongue, heart problems (sometimes), facial features spaced differently.
When I went in, the ultrasound person said, ''don't worry, she is fine,
normal baby''. That is all they do, sit in that room looking at fetuses
and they know when they see something out of the ordinary. God I hate
that test, I have friends whose doctors won't give thier patients that
test for just the reason you are experiencing, it does so much more harm
than good and causes so much anxiety. Please write back and tell us
what happens.
Hang in There, it's BS
i just want to say first how sorry i am that you have to go through the
stress of this situation. but starting with the really good news- i
can't tell you how common false positive AFPs are. i had one (i have 3
healthy children), my friend an ob/gyn had it on 2/3 of her children and
countless others. so chances are, you are worrying over nothing.
especially if you've already had a level II ultrasound. and if you
haven't get one today. there are so many signs of a down's affected
infant that you can pick up on a scan- nuchal folds, heart defects,
wider spaced eyes. the list goes on and on. on the other side. say
you get an amnio and it turns out positive for downs. while you are
trying to decide now, what to do and it is your every waking thought,
wait until you have more info.
my girlfriend lost 2 babies at 20 weeks. while she is fine now, she
needed therapy. and now she can care for her other 2 kids without
thinking about what could have been. i chose to terminate a pregnancy
in december in the first trimester. what i can tell you about my
experience was that the week leading up to it and the 2 mos after were
torture. i cried constantly. but i saw a therapist and now it's not my
every waking thought. do i wonder what could have been? yes. do i
obsess about it like i used to? no. i pray that you don't even have to
make this decision. i chose what i did because i thought it was in the
best interest of my family (hubby plus 3 small kids). if you are
carrying a down's baby, and chose to terminate, you'd be doing the same.
neither decision is an easy one. one is more short term grief, but the
other is longer term care. i have 2 friends with their 2nd child w/
down's and they cannot imagine life without them. but if you do have to
make the decision either way, please, please know that there are lots of
people out there who will support you.
momma to little ones
I had a +AFP during my pregnancy and it was an extremely stressful time.
Only after getting the test did I realize how many false positives there
were. Did they see any signs on your ultrasound? Odds are sig lower if
the ultrasound is clear. Are you meeting with a genetics counselor? I
LOVED the one I saw at Kaiser Oakland. Only you can make the decision
about when life begins. I'm sorry you have been put through such
stress; my prayers are with you and your family.
been there
First: Please don't agonize and think so far ahead. The AFP is notorious
for producing false positives, especially with mature mothers to be. I
have known several women who got a positive AFP and NONE of them had
anything turn up on the ammnio and their babies were fine. When I had
the AFP, I was repeatedly told that that the AFP does tend to go towards
false positives.
2nd: It sounds like you've bonded with your baby-2-be and have doubts
about terminating the pregnancy should you get bad news.
Don't let yourself get pushed down that road (I fully support
reproductive rights but am angered by people who just expect that that's
the only sane choice a woman would make)- remeber the adage ''if you
don't know, dont''. Whatever choice you make, make sure it's your
choice.
3rd: If you can't stop worrying and must imagine the 'worst- case
scenario'' -that your child has Downs Syndrome- it may not be nearly as
much of a handicap as you think. As backward of a society as we are,
people are finally getting the clue that people with Downs Syndrome are
not something to be hidden away or ashamed of. Also The level of
impairment caused by Downs can vary widely- I'm not saying it's nothing
to be concerned about- but it is not this horrible, horrible thing to
have. People with downs syndrome are not necessarily burdens at all.
Please contact your doctor and see if there is anyway you can get the
ammnio results sooner. I seem to remember there's some fee or something
you can arrange to get the lab to get you results in a few days-
expensive, but worth it if it will give you the information you need.
Again, the AFP test produces many false positives. Perhaps your
healthcare provider could reassure you about how the test is quite often
inaccurate.
I hope things work out for you and I hope you'll update us on what
happens. Whatever you do, please postpone your worry until after you get
the amnio results. Stress is not good for any pregnancy.
anonymous
IF your amnio shows a problem you will have decisions to make.
While you are waiting you can spend some time learning about the range
of difficulties and disabilities that are associated with Down Syndrome
- I spent those days reading message boards on iVillage (at that time)
about Down Syndrome, about test results, about anything I could think of
that I needed to know.
By the time I had my results (CVS, not amnio) I knew I could keep the
baby, and that many Down Syndrome kids live full and loving lives and
are precious to their parents and families... while my initial thoughts
had been that I couldn't ''do that'' to my other kids. When my results
said no chromosomal problems I was even more excited, but I'd already
gotten over being panicked.
One of the first things you need to know is that the AFP test is not an
indicator -- it is a screen -- As frightening as your result may be,
all your AFP says is that they cannot absolutely rule out any
possibility of Down Syndrome... the test is designed as an easy way to
reassure some parents, but instead it panics many others...
My understanding is that the older the mother the greater the chance of
a ''false positive'' (not being screen out, even though there is no
problem). I was 44 and my doctor didn't even do the AFP because it would
have been positive no matter what.
Good luck, try to be calm,
They said it was ''Character Building''
I am so sorry you are going through this. AFPs are notorious for giving
false positives. With my first child we had an AFP of ''Greater than 1
in 10'' which is basically the worst results you can get and the amnio
and the baby were fine. It was a horrible wait to find out though...
Anon
All I can do is advise you as to what I would do if I were in your
position...I am the mom of 3, and had the last two when I was over 35.
My husband and I agreed completely about what we would do if the tests
came out positive for any serious type of birth defect or anomoly--we
would end the pregnancy immediately. We already had 2 beautiful,
healthy children, and having a child with Down Syndrome was not
something either of us wanted. (#3 was normal and healthy too.) Having
a severely handicapped child in our extended family, we see how much
stress and strain it puts on the parents and everyone who is around. I
don't mean to demean anyone who has made the choice to carry to term a
child with Down Syndrome, it's
just not the choice we would have made. You're right--your entire
lives would
change, and the future, beyond our own lifetime, is uncertain for
children with disabilities. Be very happy with the 2 children you have,
and know that you can get pregnant again if you choose to end this
pregnancy. Also remember it's very possible the AFP was a false
positive! Best of luck.
A Berkeley mom of 3
While you will probably get tons of feedback from women who had bad AFP
numbers but everything was ''fine'' that was not the case for me. I
terminated two pregnancies (one at 18 weeks, one at 13
weeks) for Down syndrome (I was also 37).
First off, you can get what are called ''FISH'' results - its about a 48
hour turn around. THey are over 99% accurate. Some insurance companies
don't pay for them (maybe a few hundred $ but worth every penny).
Second, talk to actual parents of ADULT children with Down Syndrome. I
have been fortunate to speak candidly with some and all completely
support termination. A young child with Down syndrome is often not that
different than a ''normal'' young child. However, a 20+year old is very
different. In the case of one friend's, her son never was able to get
out of diapers, speak beyond about an 18 month old level and is starting
to show signs of Alzhimers (spelling?). She describes her life as very
difficult. Whatever path you take it is not an easy one. I would keep
the well being of your two children in mind. Mostly, I hope the test was
wrong.
been there
Dear Friend,
Please accept my condolences at this devastating news. I was you ten
years ago -- I literally passed the 10th anniversary of my unwished-for
abortion two weeks ago. I did have a little cry about it, but I can't
say that it's a sorrow that I still carry in the forefront of my
consciousness after all these years. It's become just one of many pieces
and stories that make up my life.
I always considered myself a bit lucky, in a rueful way, that our child
was not only Downs, but had pretty much every troubling feature of ill
health that can go along with Downs children. So, we were faced not only
with all the issues you raised (including the effect on our first
child), but there would have also been surgeries, hospitalizations, and
many other medical interventions. So in that sense, our decision was
made easier.
As probably everyone who responds to your posting will attest, only you
and your husband can make this decision. Please do keep in mind that you
can become pregnant again and bring that soul to Earth if that is part
of the metaphysical question for you. (I never had a second child, but
I was older and there were other factors for me.) Remember that the
universe continues to pour love into your being no matter what your
decision may be.
I wish you peace.
Survived and found happiness again
We also had a positive AFP screen when I was 35, and our baby is fine.
Most of the positives end up being false positives, especially if you're
age 35+. The waiting is awful. There is an option for getting fast
results (4 days) from an amnio, please ask about that.
older mom
First I want to say how sorry I am that you may be in the position of
having to make a very difficult decision. I had many of the same
feelings and thoughts that you mentioned in your letter. There is no
easy right or wrong decision. Either way you decide, something will be
learned, some pain will be created and some pain will be avoided.
I ended my first pregnancy at 20 weeks. I had always thought that I
would keep a Down's Syndrome child - but when it happened to me, I
surprised myself. After the initial shock of the amnio results (which
arrived the day after Christmas) I couldn't sleep and during the quiet
of night I asked myself if I thought this child wanted to come into this
world in the body I could provide him. I actually thought I heard him
tell me it was okay to let him go, and that I didn't need to feel
guilty. Of course I question whether this was just my brain giving me
what I wanted
to hear - but that is how I came to the decision.
I went through an induction at Kaiser Walnut Creek. The nurses were very
kind and stayed up talking to me all night. They were not disapproving
of my decision, and told me of the many medical problems that most
Down's children suffer.
If you choose to end the pregnancy, I don't know if your health plan
gives you the option of an induction, but Kaiser does. I thought that I
would never have children again, so this was the closest I thought I
would come to giving birth so I chose it over an abortion. One
unexpected advantage was that I got to hold my child's body after he was
stillborn. The memory of holding him is very dear to me. He looked so
small and so tiny.
Strangely, it reinforced my belief I had done the right thing, but it
also reinforced a deeper understanding that my decision had ended this
child's life. Despite how intensely sad I was over his death, I felt
quite sure I had done the right thing, and I felt joy at seeing him.
That dichotomy still feels so mysterious. I do feel a deeper affinity
for & a desire to go and hug Down's children whenever I see them.
One hard part was my family's disapproval and active insensitivity. For
example, my sister told me it was wrong, and then called me the
following month to tell me all about a high functioning Down's Syndrome
child she had met and how perfectly delightful the child was, so loving
and loved by her family.
Ouch.
Again, my deepest sympathy for your sad news and the decision you may
have to make. I wish you the best.
Mombo
For years I have worked with children and adults with Down Syndrome, and
frankly, they're FUN! Sure, they have ''special needs,'' but people
with Down Syndrome are generally very loving and affectionate, and, most
likely, this child, if it has Down Syndrome, will enrich your life and
the lives of your family in ways that you never would have dreamed!
Feel free to email if you want to talk!
kevin
I know you will get many many responses telling you how fulfilling it is
to raise a child with Down's Syndrome, and I truly believe that it is.
I don't have a child with Down's, but I do have a child with special
needs, so I just wanted to also lend support to deciding to terminate
the pregnancy, should you decide that. It is a horrendous decision to
have to make, and I'm sure that if you had the baby he or she would
bring you joy and happiness, but there's no doubt that having a disabled
child turns your world upside down, challenges your marriage to the hilt
(mine
failed) and impacts your other children tremendously. All the
considerations you've mentioned are legitimate, and if you decide to
terminate, I hope you believe that those were valid reasons to do it.
That being said, from everything I've read here at BPN, a positive AFP
is just as often false as not, and you may have nothing to worry about.
Whatever you decide, it will be the right thing for your family. Good
luck.
a fellow traveler
this page was last updated: Mar 12, 2009
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