|The following is the real-life story
of Carri, a patient who suffered from Poland's Syndrome.
Thanks to all that you two have done to make Carri's life richer
and fuller. For the first time in her life, she is not embarrassed
about her body. Her confidence has soared, and as she says, "I
feel so good about myself."
This is a lot of information and more lengthy than I planned, but
it is a life-changing experience that I just can't help but share.
So, read this when you have time.
A week ago Saturday I returned from another fabulous week in Washington,
D. C., assisting with the 59th Annual Horatio Alger Association
Awards program and seeing the cherry blossoms. The following day,
I accompanied my Step-daughter Carri to New York for surgery to
repair a birth defect that was caused by Poland Syndrome. Carri's
chest on the right side has been deformed since birth as she has
little breast tissue on her right side, while having a significant
amount on the left side. She is also missing seven major and minor
muscles in the upper right side of her chest and shoulder, including
her right major pectoral muscle. Beginning at the age of 14, doctors
have tried to remedy the situation through at least five surgeries
by placing implants in her chest. The results have never created
a normal appearance for her. The lack of tissue and muscle structure
have not allowed the implants to be secured properly and there has
always been a hollow area above the implants. These implants have
been too close to her nerves and their weight uncomfortable, usually
causing other problems like numbness and weakness in her arm, pain
in her elbow, and restricted motion in her shoulder. One even ruptured
within a couple of weeks after being inserted.
Last year, we found out about a relatively new surgery that was
developed by Dr. Allen in New Orleans for breast cancer patients
that allowed for reconstruction using a woman's own fatty tissue
from the stomach or buttocks. Even more recently, Dr. Allen began
to use this surgical technique on Poland Syndrome victims. Although
we consulted with Dr. Allen's associate, Dr. Levine, last July,
Hurricane Katrina wiped out our plans for surgery in November, as
well as the Women's Clinic for Microsurgical Breast Reconstruction
in New Orleans. Dr. Levine has now relocated to New York, and operated
on Carri last Tuesday. It was his fourth breast reconstruction in
his new location and his first ever for a Poland Syndrome patient.
I couldn't be happier to report that the surgery was extremely successful
and that Carri's recovery is going well and ahead of schedule. According
to Dr. Levine, the surgery was more extensive and complex than anticipated.
Carri was in surgery for seven hours. The implant, thought to be
250 cc. but was actually 335 cc., was removed and replaced with
more than 400 cc. of tissue from Carri's stomach. The additional
was needed to fill the hollow area in her upper right chest. With
an incision from hip to hip across her stomach, the tissue and blood
vessels were harvested and inserted into her right breast and chest
cavity. The blood vessels were reconnected to those in her chest
to keep the tissue alive. This surgery is 99.6% successful, as is
the case for Carri.
We returned from New York last evening after Carri's post-surgery
visit with Dr. Levine. Both Carri and Dr. Levine could not be happier
with the results. Carri is beaming. For the first time in her 41
years, her chest appears normal. The upper chest is smooth and balanced.
Her right breast matches her left breast, which was reduced in size
several years ago so that only one implant would be needed to approximate
its size on the right size. The pain in her elbow and arm are gone.
She has experienced no numbing or tingling sensations since the
surgery. She has an increased range of motion in her right arm and
shoulder. AND, for the first time she can wear tank tops and bathing
suits and not worry about covering up her deformed upper chest.
She tried on a top with spaghetti straps which I purchased at Macy's
for her and was so happy with her appearance.
I realize that this message simplifies a very delicate and complicated
surgery, but if you ever have a friend who has to experience
breast cancer and/or a mastectomy, please remember to tell her about
DIEP-Flap surgery. It is much more satisfactory than implanting
a foreign object in a woman's chest to simulate normalcy. The life
expectancy of an artificial implant is only five to eight years.
Transplanting your own tissue will last a lifetime.
We will return to New York in July, to have the skin flap removed
from her lower right breast. It was transplanted from her stomach
to her chest with the fat tissue, so that Dr. Levine could monitor
the success of the transplant. The blood flow in the vessels was
monitored, as was the temperature of the skin flap. All is well.
This last step is cosmetic and will leave Carri with only one scar
on her chest instead of two. For cancer patients, this is the time
when nipple reconstruction is performed. Fortunately for Carri,
she will not have to undergo this procedure. We will be staying
at the Miracle House, where I stayed this time during Carri's surgery
and hospitalization, and where she joined me during her recovery.
This is a great place, similar to the Ronald McDonald House concept,
and our stay was paid for by Dr. Levine.
We shared our three-bedroom Miracle House apartment with Karen from
Fort Worth and her caretakers, first Lynn and then Wendy. Karen
had been able to stay there during each of her monthly visits to
New York for treatment over the past two years. Karen was recovering
from surgery for liver cancer, which was first discovered when she
had a volley-ball sized tumor on her liver. No hospitals in Texas
would touch her case. Fortunately, her physician husband found out
about a doctor in New York who uses new technologies and Karen's
tumor was reduced and she was able to have a lobe of her liver removed
two weeks ago. Karen is a walking miracle, a "one of a kind"
case, as her doctor says. Karen was able to depart yesterday, on
the same day that Carri and I did. We are now all friends and were
able to share our experiences. Patients can only stay at the Miracle
if they are accompanied by a caretaker.
If you would like any additional information about this surgical
procedure, please contact me, or better yet, go to www.diepflap.com
. Dr. Heather Erhard assisted Dr. Levine with the surgery and he
does the same for her when she is the surgeon. They are a great
The insurance saga is another story. To date, Carri's insurance
company has refused to pay, saying that they only take care of birth
defects at infancy, and that her surgery is cosmetic. As far as
we know, we have exhausted the appeal process, even with the help
of the insurance commission. BUT, we will keep fighting. As you
might imagine, Willie figured out a way to finance this surgery
for his daughter. We all agree that it is the best $35,000+ that
he ever spent.
P.S. Carri got to see the Empire State Building, walk up 5th Avenue
to Central Park, and take a subway ride to Battery Park to see the
Statue of Liberty before we left. This was her first trip to New
York and one that she will always remember.