Morgan Alexandra Bachmann was born in Okinawa Japan
on March 26, 2000 with Spina Bifida. Prior to her birth, we
were unaware of any problems with the baby. We thought we
were going to the hospital to deliver our first child, a
healthy baby girl. Within a few minutes after her birth, our
world came crashing down around us. We were flown to Hawaii
to receive medical care from Tripler Army Medical Center.
Although we met many wonderful people there, we also had our
first lesson in dealing with some in the medical field that
don't necessarily know or care about our daughter's
condition. Morgan's back was closed on her third day of life
and she had a shunt placed a few days later because Morgan
developed hydrocephalus. It seemed as if we would be on our
way after two weeks of hospitalization but unfortunately,
her back wouldn't heal and it required two more surgeries.
After six weeks of having our lives stand still, Rich
received orders to Pensacola, Florida and our adventure
began.
Morgan is 4 years old now. She has had 9 surgeries so far.
She had her back closed 3 times, 3 shunt
placements/revisions, club foot release, hip surgery and
chiari decompression. Despite this, she is a happy,
intelligent, VERY verbal little girl that will win your
heart in a second. She loves preschool, Sunday school and
playing tea party with friends. It has been very challenging
at times but we are so grateful and blessed to be her
parents.
A note for new parents
After months of dreaming about attending ballet recitals,
baseball games, ivy league graduations, getting a diagnosis
of Spina Bifida can be devastating. This is especially true
because most medical professionals will paint the WORST case
scenario for you. Time and time again, people leave their
OB's office feeling as if the world has ended and life will
never contain joy again. Please know that the "worst case
scenarios" do happen but not to a lot of us. As much as
doctors would like us to think they know it all, they don't.
Prenatal tests can give *some* clues to what the outcome
will be but until the baby is here and developing, you never
know. When we had Morgan, we were told she had NO movement
below the waist because her lesion was L2 and then she
moved. We were told she would probably not walk and would be
delayed in all of her milestones. She rolled over at 5
months, sat up at 6 months, crawled at 7 months and began to
attempt to stand at 8 months. She walked with a walker at 14
months and we were told that was the best we could hope for.
At age 3, she began walking without the assistance of the
walker. You will grieve this. You HAVE to grieve this. You
will be moody, resentful of parents with healthy children
and intolerant of people that still seem to stress over
their "easy" lives. These feelings are all normal and don't
judge yourself for having them. Soon you will begin to make
peace and you CAN feel happiness and joy again. As you get
to know your beautiful new baby, you will be amazed that you
get ring side seats to watch such strength and determination
develop. It is a great adventure to parent a child with such
a wise soul. And by the way, you will learn that ballet
recitals, baseball games and ivy league graduations CAN
still happen!! Get as much early intervention as possible,
accept help that is offered, love your baby with all of your
heart and sit back and cherish the ride. Welcome to Holland.
A note for friends and family
If you are reading this then most likely you have a friend
or family member that has just found out his or her baby
will have spina bifida. First, let me applaud you for caring
enough to research this and learn. Having a child with Spina
Bifida will change your loved one forever. Some of the
changes will be good and some not so good. The best gift you
can give is patience. There are so many emotions that come
with parenting a special needs child and life becomes a
roller coaster at times. As much as you might try to
understand, you won't be able to unless you have a child
with special needs. So, how can you really help? I have
several suggestions!! First, everyone is different. Some
people want to be surrounded by visitors and others want to
be alone. Ask what they want and then respect their wishes!!
If they don't want calls and visits, send cards and flowers
to let them know they aren't alone. Offer to keep the other
children if there are any. The siblings can really feel left
out during this time so doing something cool for them is
great. Cook a meal. Hospital food is terrible and a nice
home cooked meal can really lift spirits. If the baby stays
in the hospital for a while, offer to sit with the baby and
give the parents a break. Send the parents gift certificates
to local restaurants so they can take a break together while
the baby is in the hospital. If you want to send a gift, how
about a tape recorder so that mom and dad can record
themselves and let the nurses play it while mom and dad take
breaks. Lullaby music is great to help drown out the beeps
and alarms of the NICU. Many times the outfits that have
been bought can't be worn because of the wires and such.
Nice diaper shirts are great to have. Send mom and dad
journals that they can use to write down feelings,
information they don't want to forget or questions to ask
the doctors. If you are a great friend or family member, you
can offer to learn how to do some of the medical procedures
(such as cathing) so you can give mom and dad a break when
the baby comes home. Don't be offended if this one gets
turned down. Half of the parents I know really want this
offer and half would NEVER think of allowing someone else to
do this. It can't hurt to offer though, right? Several
parents have enjoyed gift certificates for house cleaning,
help with house cleaning and help with lawn care. Gift
certificates for food delivery are also helpful. The first
months are spent back and forth to the doctor and a lot of
time is spent learning so there is little time for basic
housecleaning and cooking. Life will stabilize, happiness
will return and a new "normal" will be established but it
will take some time so never EVER forget to offer hugs and a
shoulder to cry on.
Kimberly
|
