Family Forum / Pregnancy / Pregnancy / June 2005

"Joybelle" <joybelle15@hotmail.com> wrote in message

Hi Joybelle,

I am sorry you are having to go through this. I just really wanted to tell
you that if it comes to multiple surgeries with the child, I have been
through many operations with my oldest daughter. If you need someone to talk
about this or help support you, please feel free to email me. Sometimes life
has a funny way of changing outcomes that we have planned for. Hang in
there. My thoughts are with you and your family.

I don't know how I missed the last post, I just went and read it after
reading this one.  I'm glad to hear that the outcome is going to be much
better than originally thought, but I'm sorry you are having to go through
this at all.  I wish you all the best.

My goodness, that is a dramatically different result.  What a roller coaster
for you.  I hope that you are able to get a lot of information about spina
bifida, specifically L4.  The placement of the defect and the amount of
spinal material that protrudes can have a dramatic effect on the abilities
of the child.  Basically, the lower the defect the better the outcome, so
lumbar is "better" than cervical, but of course that's just relativity.  I
can't imagine the pain of having a child with a serious disability and
knowing that child will likely require multiple surgeries.  My thoughts are
with you and your family.

Amy

Hi Joy...

When I read your original post, I was so sad for you.  It's difficult
enough to lose a baby before birth...but to carry it to term only to
lose it, well, my heart just broke for you.
I'm very, very glad to hear of the new diagnosis.  Your baby will have
to undergo treatments for the disability, but will still be able to
lead a good, productive life.
My brother has a severe form of spina bifida (not sure which vertebrae
is the site of his malformation) and was not expected to live at birth.
Now he's 32 years old, living and working on his own with friends,
interests and a life.  He has had to have many surgeries, including
having a shunt inserted for hydrocephalus, but he's avoided others
through exercise and physiotherapy.  He's paraplegic, but walks using
braces and crutches.    He graduated high school with the rest of his
class and was never segregated off into a separate group because of his
disability.  He's a charming, smart, compassionate person...and living
with him during our formative years has helped my other brother and me
become more aware of people with disabilities and their issues.  I know
every case is different, and as a parent it isn't easy to deal with a
major disability like this (having discussed it at length with my mom,
I'm sure of that part), but the good news is all the work and the worry
can have a positive outcome in this case.  I hope you are able to find
all the information you need to have your most pressing questions
answered, and the strength you'll need to carry on.  My thoughts are
with you, and I wish you all the best.

L.A.

Although you are still facing an extremely difficult situation, it seems
to me that at least there is a spark of hope now, where before there was
none. I hope and pray that that spark keeps brightening, and that in spite
of the birth defect, your child will be as healthy and happy as can be.

I cannot imagine the emotional rollercoaster you guys must be going
through, and to me it sounds like the negative and horrible thoughts you
are having are perfectly normal in all this. Try not to think ahead to far
and take things one step at a time.

Take care (((((Joy)))))!

Joy,

I can't imagine what you are feeling right now.  I think all those
mixed emotions are very normal and you will probably feel better when
the baby arrives and you have more information on exactly what
treatment is going to be necessary and what baby's level of disability
will be.  This is such a life-changing event for you but I know that
you will be able to handle it.  I wish I were there so that I could do
more than just listen and pray.  (((Joy)))

Leslie

Oh goodness, Joy--what a roller coaster for you. ((hugs)) and we'll
keep your whole family in our prayers.

Sharalyn
mom to Alexander James (9/21/01)

I'm really sorry to hear your latest news. It's a mixture of good and bad
news. At the moment the bad must seem to be overwhelming. Don't feel guilty
of having negative feelings. You're grieving for the healthy child you hoped
for. You will still love them. When I was told about #2's arm I thought at
times that maybe it would be better if she died (no I didn't consider an
abortion) and felt guilty about that. Once she was out, it didn't matter
what was wrong, I loved her. You will be amazed at how strong you are for
them.
It does get better. (((hugs)))
Debbie

Gosh what a roller coaster for you and your family.  I hope the
amniocentisis turns out fine.  Hang in there.

Hugs from Cam

(((((Joy)))))

I am so glad that there is so much hope now when the outlook was so bleak
before. Please be gentle with yourselves. When we embark on pregnancy, few
people prepare themselves for anything other than a perfect outcome. There
are many things that will be different for this child, things that he/she
may not be able to do. You're grieving all those things that you'd looked
forward to, which is a normal reaction, so please try not to feel too
guilty. It doesn't mean that you love this child any less, you're just
facing a different future than the one you had planned for.
I know this has been posted several times before, and I hope you don't mind
me posting it again. Bear in mind, I have not had the experience of raising
a child with a disability, so I can't claim to know what you're feeling
right now. I have a brother with Aspergers, a vastly different condition to
spina bifida, but with its own set of hurdles. While living with him was
been downright difficult and frustrating for us all at times, we wouldn't
swap my brother nor our family life for the world. It just was, and is part
of who we all are. This piece has always struck a chord with me.
Thinking of you all during this difficult and challenging time.

                                       "Welcome To Holland"
                                       by Emily Pearl Kingsley

  " I am often asked to describe the experience of raising a child with a
disability--to try to help people who have not shared that unique experience
to
understand it, to imagine how it would feel.  It's like this:
  "When you're going to have a baby, it's like planning a fabulous vacation
trip--to
Italy.  you buy a bunch of guidebooks and make your wonderful plans.  The
Coliseum,
The Michelangelo David.  The gondolas in Venice.  You may learn some handy
phrases in
Italian.  It's all very exciting.
  "After months of eager anticipation, the day finally arrives.  You pack
your bags
and off you go.  Several hours later, the plane lands.  The flight attendant
comes
and says, 'Welcome to Holland.'
  "'Holland?' you say.  'What do you mean, Holland?  I signed up for Italy!
I'm
supposed to be in Italy.  All my life I've dreamed of going to Italy.'
  "But there's been a change in the flight plan.  They've landed in Holland
and
there you must stay.
  "The important thing is that they haven't taken you to a horrible,
disgusting,
filthy place, full of pestilence, famine and disease.  It's just a different
place.
  "So you must go out and buy new guidebooks.  And you must learn a whole
new
language.  And you will meet a whole new group of people you would never
have met.
  "It's just a different place.  It's slower-paced than Italy, less flashy
than
Italy.  But after you've been there for awhile and you catch your breath,
you look
around, and you begin to notice that Holland has windmills, Holland has
tulips,
Holland even has Rembrandts.
  "But everyone you know is busy coming and going from Italy, and they're
all
bragging about what a wonderful time they had there.  And for the rest of
your life,
you will say, 'Yes, that's where I was supposed to go.  That's what I had
planned.'
  "And the pain of that will never, ever, ever go away, because the loss of
that
dream is a very significant loss.
  "But if you spend your life mourning the fact that you didn't get to
Italy, you
may never be free to enjoy the very special, the very lovely things about
Holland."

Joy wrote:

Joy,

My gosh!  What an emotional wringer you and your family are going through!

Regarding "some big miscommunication" between the radiologist and your
doctor.

Maybe one of the medical doctors on MKP has commented (I haven't read the
whole thread) - but it seems to me that if a radiologist report was
generated and your doctor communicated the contents of that report to you
accurately - then the error was entirely
the radiologist's (assuming it was indeed an error) - except to the extent
that general obstetricians are expected to read ultrasounds themselves to
verify what's in the report.

I join everyone in expressing sadness and wishing for the best.

Sincerely,

Todd

Dear Joy,

What an amazing turn of events.  I can't even imagine
what it's like to have been working to prepare yourself
for one difficult future event and then all of the sudden
be looking down another difficult road.  I'm sure you'll
do an excellent job navigating the medical treatment
required, and I wish you and yours all the best.  Please
continue to keep us posted!

Emily

Goodness, this would be hard.  I don't suppose you are up to writing letters
of complaint atm, but the miscommunication you have suffered from is not
something that should ever be repeated.

You're in my prayers.

Oh, Joy, what a lot to handle.  I can imagine that the emotions must be
very mixed, to say the least.  My understanding is that spina bifida
can be along a wide spectrum of severity -- I hope that the baby has
the mildest form possible, please G-d.  You and your family continue to
be very much in my and DH's thoughts and prayers.  I'm so sorry you're
having to go through this ordeal.

Bryna

[...]

So there is a chance your baby could be normal?  Rollercoaster indeed.

The first person I met with spina bifida was a teenager at the time,
struggling to continue with braces and crutches.  He was effectively
paraplegic.  Since then, he has transitioned to a wheelchair and,
when necessary, dragging himself.  And he has earned a BA and MS from
two of the world's best universities, and enjoys a very active social
life.  He is very handsome.  One time he asked me to sit on his lap,
in his wheelchair, but I was too shy to take him up on it:  both his
parents were present, and one of them was my own academic advisor.  I
have always regretted that missed opportunity.

I can't offer much except my deepest sympathies and wish for strength.
I understand the roller coaster this is, and the conflicting emotions
are completely reasonable.

We'll be thinking of you through this time and hoping for the best
possible outcome.

Hugs to you as you deal with this new information.  It's a lot to process.
Sending peace and strength.