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Life-Saving Baby
Doctors
The Story of My Twin Girls
Have you ever heard it said that we appreciate
something more when we’ve nearly lost it? As I type,
I listen to the giggles and baby chatter of our beautiful
twin babies and intensely feel the truth of this statement.
I would like to share our story of our babies’ journey
into this world and how they were saved from an almost-certain
death before birth by a very special doctor.
It all began on a sunny morning in late July last year. I
had planned to arrive late to my investment job because I
had to stop by the perinatologist's office at California Pacific
Medical Center in San Francisco for what I thought would be
a routine ultrasound. My husband Spencer was out of town on
a business trip, so I was alone for the visit. 16 1/2 weeks
pregnant with our identical twins, I still had intense morning
sickness that lasted all day, but as this was my first pregnancy,
I didn’t know that this was abnormal, and was just thrilled
at being pregnant so I didn’t mind the side effects.
At my appointment, the ultrasound technician very professionally
went about the business of scanning and measuring our babies.
She then left the room and conferred with our perinatologist,
Dr. Carl Otto. He then came in after reviewing the ultrasound
pictures with a grim, drawn look. "I'm so sorry to tell
you, but your babies are suffering from Twin-to-Twin Transfusion
Syndrome," he said. I sat, stunned, not knowing what
it was, but presumed it was serious. He provided me with devastating
information and statistics that confirmed my fears.
Twin-to-Twin Transfusion Syndrome (TTTS) is a disease that
strikes about 10% of all identical twin pregnancies. In the
US, it affects over 7,500 babies—or 3,800 pregnancies—each
year. This serious condition occurs when twins share a single
placenta (or afterbirth), which contains blood vessels connecting
the twins’ blood streams. In a sense they are like conjoined
(or Siamese) twins, but are connected in the placenta instead
of their bodies. One baby (the recipient) may get too much
blood, while the other (the donor) is losing blood through
the abnormal connections. The recipient may die in heart failure
from a cardiovascular system overload, and subsequent over-production
of quarts of amniotic fluid. The donor may die from the loss
of blood, and tends to have very little amniotic fluid. While
the twins begin development totally normal, the placenta abnormalities
cause their subsequent death or serious birth defects. The
loss rate may be as high as 80 to 100 percent for twins who
develop TTTS at mid-pregnancy (the second trimester). TTTS
babies may die in the uterus or at birth from prematurity.
More than half those who survive suffer from many serious
birth defects including cerebral palsy.
There were several courses of treatment that Dr. Otto discussed
with me that day. The first option was termination of the
pregnancy, either directly through abortion or by letting
nature take its course with inevitable miscarriage. This was
absolutely not an option for us. The second was reducing the
excess amniotic fluid that developed around the recipient
baby, done via an amniocenteses. At a 50% chance of surviving
twins, this procedure might balance the amount of amniotic
fluid surrounding each baby and hopefully spur the placenta
into regularity once again. The third was an in-utero surgery
called fetoscopic laser occlusion of the connecting vessels,
pioneered by an obstetrician named Dr. Julian E. De Lia. Because
of the situation’s urgency, Dr. Otto recommended an
amniocentesis within the next hour, and then recommended I
call Dr. De Lia later to learn more about his surgery.
Terrified and panicked, I called my husband Spencer from the
doctor's office. We agreed to do the amnioreduction right
away, but the next plane would not bring him home until evening.
So I called my cousin Ben, who rushed over from work to sit
with me through the procedure. The period between the diagnosis
and seeing my cousin was the most agonizing and lonely time
of my entire life. I sat in the doctor’s office lobby
by myself and cried openly. I felt hopeless and helpless,
wanting to save the babies who were struggling for life inside
of me but not knowing how. During this time, an elderly woman
approached me, sat down and gave me a long, silent hug. To
this day I think she was an angel here on earth to reassure
me and keep me strong before the procedure. Dr. Otto took
2 liters of fluid from my uterus that day, and ordered me
to remain at bed rest until my appointment 4 days later.
I left a message that very day for Dr. De Lia. He didn't know
anything about me and really didn't owe me anything—he
only knew me through the voicemail I left, choking on my own
words as I tried to get through a message asking for information
from his office. He called me from his home in Milwaukee late
that same night, and spoke to Spencer and me for nearly an
hour about TTTS, its treatment, and the efforts we ourselves
could take to combat our helplessness in battling this deadly
disease. He suggested horizontal rest and nutritional supplements
(such as Boost or Ensure) as ways to help the status of the
twins. Besides the laser surgery, his research of TTTS also
found that the majority of TTTS mothers are severely anemic
and low in blood proteins. He then told us more about the
placental laser procedure.
The technique uses a small 3.5millimeter scope to identify,
and then use the laser to coagulate the connecting vessels
between the twins. The twins become separate and the passage
of blood from one to the other stops. The surgery is performed
in "pre-viable" pregnancies (less than 25 weeks),
where delivery of the TTTS twins is not an option. Dr. De
Lia told us that for now, my best bet was to drink my Boosts,
stay on bed rest, and continue the amniocenteses if necessary.
Our twins would only be candidates for the laser surgery if
they met certain "criteria", which included severe
size differences between them or evidence of impending heart
failure. We ended that call with the hope we'd never meet,
because we prayed the simple measures would correct the condition
and make surgery unnecessary. Meanwhile, he suggested we contact
Mary Slaman-Forsythe, the director and founder of the Twin
to twin Transfusion Syndrome Foundation in Cleveland. We did
so and Mary immediately sent us a comprehensive book on the
history, placental abnormalities, treatments, and success
stories in TTTS. So although I was nearly hysterical with
panic and grief, I had enough lucidity to gather the necessary
facts, speak with Mary and with Dr. De Lia, and make the decision
with my husband that if necessary, I would undergo this surgery.
As fate would have it, my twin brother Christian and I were
born, 29 years earlier, at the very same hospital from which
Dr. De Lia operates-- St. Joseph Regional Medical Center in
Milwaukee, Wisconsin. This fact only solidified my decision,
as I felt this was somehow in the plan.
One agonizing week later, and after a second amnioreduction
of 1 more liter of fluid, the TTTS appeared to be getting
worse. The twins' size difference was greater, our recipient’s
heart was starting to thicken, and Dr. Otto felt the future
bleak for the twins without Dr. De Lia’s laser surgery.
Mary and the TTTS Foundation arranged for us to fly complementary
on Milwaukee’s Midwest Airlines. They have a program
called ‘Miracle Miles,’ where frequent fliers
donate mileage so that families with sick children can fly
to leading medical centers for treatment.
I underwent the laser surgery on August 14th, 2002, at only
18 1/2 weeks of pregnancy. In the operating room, Dr. De Lia
keeps prayer cards of Saints Gerard and Jude, the patron Saints
of pregnancy and hopeless causes. Just before the surgery,
we said a prayer together and asked St. Gerard to help our
babies stay strong. I drifted off under the anesthesia, knowing
that I was in the hands of a faith-filled surgeon who is totally
dedicated to saving little twin babies with TTTS.
The surgery which Dr. De Lia pioneered is a miracle to thousands
of otherwise hopeless expectant parents. In 90% of the cases
where the operation is performed, at least one twin survives,
and in 68% both twins live. Less than two percent of the survivors
have any disabilities or birth defects, compared to up to
30% with some other treatments. Dr. De Lia began his TTTS
research in 1983, and five years later the first placental
laser surgery was performed October 3, 1988, at the University
of Utah Health Sciences Center in Slat Lake City. The learning
curve for the procedure was completed in 1994. Although other
centers in the U.S. now perform this surgery, I found it strange
that none of these surgeons studied under Dr. De Lia. Sadly,
they are putting TTTS babies through redundant learning curves,
which result in lower survival rates and more handicaps in
survivors. For me, I never questioned my decision to ask Dr.
De Lia to perform the surgery as opposed to one of these other
centers, as I felt most confident in the surgeon who created
the procedure, and I thought his experience offered me the
best shot at keeping my babies and me safe and alive.
I sat waiting, following the surgery, hoping of course for
the best outcome but still preparing for the worst as I had
been since that July day. I was unable to return to work,
as I was ordered to strict bed rest for the remainder of my
pregnancy, which hopefully would last another 10 weeks, when
they would be at 28 weeks’ gestational age, a big milestone
in the eyes of medical professionals. I felt understandably
superstitious about having baby showers and doing even the
most basic preparatory work for what I desperately hoped would
be our impending two arrivals. Also during this time my husband's
mother passed away and so he flew to Kansas for 3 weeks just
a month after my surgery (I of course couldn't go). I was
so fortunate to have many friends and family members flying
out to San Francisco to care for me while I sat, in bed, thinking
and dreaming about these babies, and aware of their every
twist and turn inside of me.
On December 15th, 2002, over eighteen weeks after their in-utero
surgery, our beautiful little angels Sophie and Sara were
born....small of course, but otherwise healthy and perfect.
As I rub noses with these two tiny and delightful faces and
hear their squeaks and babble, I am again overwhelmed with
appreciation of what we have almost lost. I feel absolutely
gutted at the prospects of where we'd be if we had not found
out soon enough, or if we had decided to terminate the pregnancy,
or if Dr. De Lia hadn’t dedicated his life’s work
to curing the seemingly incurable. The world would be deprived
of the rays of light that are our girls, who are the most
resilient, joyful and delightful babies I've ever known. We
are so thankful to our physicians: Dr. Otto who diagnosed
the disease early and was informed enough to give us a chance
to help them; and Dr. De Lia, whose years of study and caring
hands performed the surgery that saved our babies’ lives.
Our babies would have had no chance without treatment, or
if we had opted to terminate the pregnancy. His surgery, which
is starting to be offered in centers throughout the world,
offers incredible hope for a healthy life for two or more
lives, as yet unborn but certainly not untested. These two
men are our friends for life. We are also so thankful to the
Twin to Twin Transfusion Syndrome Foundation for increasing
awareness of the disease, for giving us support and encouragement,
and for arranging our flight across to Milwaukee. Every August
14th, , on the anniversary of our babies’ life-saving
surgery, we will celebrate a little mini-milestone for the
girls- the day they were given a second chance at living and
thriving as they do today.
Katie
August 20, 2003
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