Charli Anna Merseal's story

Jason and Heather Merseal of Potosi, Missouri had been married for 13
years when they began to discuss having another baby.  Their girls Taryn,
age 10, and Lauryn, age 7  had grown to be independent young ladies. The
Merseal family had experienced a rough couple of years with Heather’s
mom’s battle with cancer and subsequent death in June 2006.  Jason and
Heather felt like they needed something positive, something to renew their
hope and make their family smile again.  They wanted another child.  The
first attempt at pregnancy resulted in a miscarriage in April of 2007 but
shortly afterward, they learned Heather was pregnant again.  This time the
pregnancy progressed uneventfully,  and the Merseal family anticipated the
arrival of a healthy baby due in early 2008.

On Feb. 13, 2008, around midnight, Heather’s water broke.  Jason drove her
frantically to the hospital in St. Louis, Missouri.  The trip that
normally takes 90 minutes took only 40 minutes that night.  After a long
trial of labor,   Charli Anna arrived via c-section at 3:21pm.   She was a
large baby.   The doctor’s first comment was “Look at the size of this
kid!?!”, but then the joking stopped as concerns mounted that something
wasn’t quite right.  The baby was rushed out of the delivery room, and
Jason was left wondering “Where did they take the baby?”  After several
minutes, Jason went down the hall to the nursery and hoped to see his new
baby girl all wrapped up in a pink blanket like all the other babies, but
there was no Merseal baby in the nursery.  Instead, a doctor he’d never
met before came out and told him there was something wrong with Charli
Anna.  It was either an infection or a heart defect, and they would know
for sure within the hour.

After an hour, Jason was told that Charli Anna had a heart defect called
Transposition of the Great Arteries and open heart surgery (an arterial
switch procedure) would be required as soon as possible.  Jason and
Heather were allowed to meet Charli Anna for just a few minutes in a
secluded area of the hospital.  It was difficult to watch their new baby
crying silently because she was intubated and no sound could be heard. 
It was also heart-wrenching  not to be able to hold her or console her,
and to see her with tubes coming from her belly button, her mouth, her
nose, her arms & legs, and lead wires coming from her chest.

Within the hour, Charli Anna was flown by helicopter to St. Louis
Children’s Hospital (SLCH) where she was admitted to the cardiac intensive
care unit (CICU).  For the first few days, she was monitored closely.
There were concerns about her lungs, and it was determined that her
respiratory status wasn’t good enough to do the surgery right away.  They
waited a few days until Monday, February 18, to do surgery.  Many family
members and friends gathered at the hospital to show their support for the
Jason and Heather that day.

Well into the operation, Dr. Huddleston, Charli Anna’s cardiothoracic
surgeon, broke scrub and came into the waiting room to tell the family
that Charli Anna’s surgery was taking a little bit longer than
anticipated. One of the holes in her heart turned out to be much larger
than expected so he felt like it needed to be repaired with a special
device.  Because of this development, Dr. Huddleston and the surgical team
decided to leave Charli Anna’s chest open.  Once the repair was complete
and Charli Anna was back in the CICU, Jason and Heather were allowed to
see her.  Nothing could have prepared them for what they saw.  It was the
scariest thing their eyes had ever seen.  When they walked into the room
and saw their new baby connected to various machines and were taken aback
to see little Charli Anna’s beating heart visible through what appeared to
be plastic wrap draped over he chest.  She was completely paralyzed by
medication.  Bells, whistles, a tower of medication pumps, and a flood of
people were in her room.  It was overwhelming.

After a couple of days of fluctuating blood pressures and labs values,
the surgical team was able to close Charli Anna’s chest.  Her heart
function seemed to be doing fine, but her ventilator trials weren’t going
as well as expected.  Nearly two weeks after surgery, the doctors were
able to extubate her, but she wasn’t breathing as easily as all had hoped.
She was placed on a nasal cannula, then back on CPAP, but by Monday
morning March 3,  the attending doctor was forced to re-intubate Charli
Anna and place her back on the ventilator.  During the intubation, they
also placed an arterial line in Charli Anna’s groin, which turned her left
leg black.  Jason and Heather were devastated that morning when they
learned she would have to be intubated again, but the devastation grew as
the day went on.  Seeing Charli Anna lie there with a black leg, which was
cut, contorted, and lifeless was difficult, but the look in her eyes said
more.  She was giving up and they could tell.

A couple of hours later, Charli Anna’s blood pressure began to dip.  The
doctors gave her intravenous calcium but it didn’t seem to help.    As
they were pushing more meds to help stimulate her heart, Charli Anna went
into cardiac arrest.  The alarms began to ring throughout the CICU.  Jason
and Heather were quickly escorted to a conference room while doctors from
all over the hospital came running past them.  For 12 long minutes, those
alarms rang.  Dr. Fehr, the attending, came in and asked permission for
Charli Anna to be placed on ECMO ( a special life support machine capable
of temporarily performing the work of both the heart and lungs) and the
parents quickly replied “YES!”  Jason and Heather held each other on that
little couch, crying out to God, screaming, begging, and just wailing.
Eventually, Dr. Fehr came back in and explained that they were able to
stabilize Charli Anna’s blood pressure without ECMO, but with lots and
lots of Dopamine and Epinephrine, two potent medications that stimulate
heart muscle.  Jason and Heather went into her room to see her and she
looked no better than before, in fact she was once again lifeless.

About 2 hours later, the same scenario occurred again.  They were scooted
off to the conference room again and this time Charli Anna was placed on
ECMO.  The family gathered and when they were allowed to see her again,
she was paralyzed, had 2  large bloody canulae leading out from her neck,
still had a black leg, and worst of all. . . her body was cold as ice.
The CICU nurses, Courtney & Laura, explained that they were keeping her
cold to preserve her organs.  That was a shot in the heart for Jason and
Heather.  Dr. Fehr also came back in to explain that there had been some
clotting in the carotid artery and jugular when they went to put in the
ECMO canulae.  This seemed odd, but it was a small problem right then.
When talking about the incident later, Dr. Fehr described his experience
in giving life-saving CPR to Charli Anna.  He said that while he was doing
chest compressions, she was just staring at him with those big blue eyes
like there was nothing at all going on.  Jason and Heather then realized
that Charli Anna had received excellent CPR.  However, the gruffness of
the chest compressions had caused some internal bleeding which they later
determined was contributed to by the arterial line.

After 3 days on ECMO, Charli Anna was weaned off the supportive device,
but remained on the ventilator.  A week later she was doing vent trials
again, though much slower than before.  By March 16, she was off the
ventilator and doing well with the exception of a recurring problem with
fluid accumulating around her lungs.   The doctors were having trouble
controlling her pleural effusions and kept having to put in drain tubes.
They eventually got Charli Anna down to 2 drain tubes, one in each side.
Though the tubes were draining lots and lots of chylous fluid, they were
able to move her out of the CICU.

On the step-down unit, 7 West,  Jason and Heather spent their days
bathing, massaging, and playing with Charli Anna.  She started physical
therapy and was beginning to be able to hold up her head.  They pulled
Taryn and Lauryn out of school and brought them to St. Louis to hang out
at the hospital.  They spent nearly a month on 7 West, dealing with
persistent pleural effusions, waiting for the draining to stop with no
luck.  Dr. Huddleston tried doing a minor surgery called thoracic duct
ligation.  This procedure was painful for Charli Anna, but she endured it
like a champ and was moved directly back to her regular room on 7 West.
The duct ligation didn’t, however, fix the effusions.  So they waited some
more and enjoyed their time with Charli Anna.

Several days later, in late April, her doctors attempted another surgery
to resolve the recurring pleural effusions. This was called chemical
pleuradesis.  Charli Anna was taken back to the CICU to have a strong drug
placed in her chest tubes.  She was then moved around for a few hours from
side to side, then the drug was removed from her chest tubes.  The purpose
was to create scar tissue between her lungs and the chest wall, preventing
the fluid from accumulating around her lungs.  It did cause scar tissue,
but it didn’t prevent the fluid from accumulating around her lungs, around
her heart, and in her abdomen.  She was originally moved back to 7 West,
but nearly a month after she left the CICU, she had to be placed back in.
This time she wouldn’t be leaving.  Both Jason’s and Heather’s faith were
about to be tested beyond belief.

Back in the CICU, Charli Anna struggled to breathe.  She tugged and tugged
for 3 days until she simply wore out. The doctors had to put her back on
the ventilator.

Meanwhile, the Merseal family was in distress.  The stress of having a
little one so desperately sick and so up and down regarding her condition
was catching up with everyone.  Jason was trying to coach both Taryn’s and
Lauryn’s little league teams because he had promised them all year.  Many
trips were being made back and forth on the 90 minute drive back home to
Potosi.  Heather didn’t return to her job as a school counselor for the
rest of the school year.  Heather had consumed all of her paid time off at
work.  Their income was plummeting but the bills at home were still coming
in and dislocation expenses related to Charli Anna’s hospitalization had
already consumed the few thousand dollars they had saved to purchase a new
air conditioner for their home before the summer heat set in.  Jason’s
family medical leave time was up and his workplace was wondering if he
could put in a couple days per week to keep the health insurance going.
So, he had to do that.   Friends and family began gathering to have
fundraisers to help Jason and Heather with bills.  Combined, all of the
fundraisers were able to replace Heather’s lost income.  Their church
family put on a new roof, which had begun leaking while they were staying
in St. Louis.  Many people contributed their time, money and talents to
helping this family.  Jason returned to work part time for a few weeks and
coached Taryn and Lauryn’s little league teams.  There were many trips
back and forth to St. Louis during that time and it was incredibly
stressful, so Jason resigned from his job at Red Wing Shoe on July 1st.
The family gave up everything to be by Charli Anna’s side.

Charli Anna continued to struggle with effusions, had to have a
tracheostomy, and many additional chest tubes.  Like many patients with
long hospital stays, Charli Anna began battling infection.  Her first
infection was peritonitis, an infection in the abdominal cavity.  The pain
during this infection was so unbearable that Charli Anna had to be sedated
for many days.  The doctors inserted potent antibiotics  into her
abdominal drains, left it there for 4 hours, then drained it back out and
started over again.  This process eventually cleared the infection,
lowered the fever, and allowed her to be awake a bit more.  The doctors
then explained to Heather and Jason that basically, Charli Anna had dodged
a bullet.  They suspected there would be more infections due to the loss
of proteins, immunoglobins, and electrolytes through the constantly
draining effusions.   Weeks passed with a few minor setbacks, but Charli
Anna always bounced back.

Then, on July 5, nearly 5 months into her hospitalization, she was
diagnosed with  a strange strain of pneumonia, but worse than that, they
discovered she had mold growing in her pericardial drain and peritoneal
drain.  This was a devastating new finding.  The doctors gave her only a
30% chance of surviving for more than 24 hours, but after 24 hours Charli
Anna was still fighting.  She fought and fought for many, many days.  It
looked like she might overcome all the obstacles one day, but the next day
she would be very, very sick again.

This yo-yo game went on until July 24, Heather’s birthday.  That morning,
Jason and Heather walked into the CICU to find banners and a poster that
the night shift made to wish Heather a happy birthday.  However, they were
also greeted by Dr. Checchia, who was there to explain Charli Anna’s
overnight setback.  Early that morning, they had found that her eyes were
not responding to the light like they should be.   She had also dropped
her blood pressure by quite a bit, stopped making urine, and her lactate
level had quadrupled  indicating  possible sepsis or shut down occurring
somewhere in the body.  Dr. Checchia wanted Jason and Heather to decide
what they wanted to happen when or if Charli Anna’s heart stopped.  Since
they had already placed her on the maximum doses of heart medicine and
antibiotics and there was no cure or explanation for the effusions and
infections, Jason and Heather  decided not to allow any more poking and
prodding of their precious little girl.  They also made the difficult
decision to withhold CPR in the event that Charli Anna experienced another
cardiac arrest.    They stayed by her bedside 24/7 for the next 3 days. .
. waiting and praying for a miracle.  On the morning of July 28,
surrounded by her parents and grandparents, Charli Anna passed away,
slipping peacefully from this world and into the presence of God.  Jason
and Heather immediately ripped off all the chords and wires and held their
baby for the first time with NO tubes.

Looking back, Jason and Heather realized that their faith had been
increased by their experience with Charli Anna, despite not getting the
outcome they had prayed for so earnestly.  Charli Anna’s life had touched
them forever and throughout the whole ordeal,  God had never left their
sides.  At the funeral, Taryn & Lauryn released butterflies at the
gravesite.  For the family, butterflies will forever symbolize Charli Anna
to the Merseal’s.  When they see one, they imagine it’s her way of saying
she’s okay.    Charli Anna’s presence is still with them and she will be
forever loved.

From a spiritual perspective, in the middle of Charli Anna’s illness, when
she would get better, then take a step back, then get better, then take 2
steps back, the couple had many talks about how much the yo-yo
days/hours/minutes were starting to wear on their faith, their hope, and
their endurance.  They also talked about how angry they were both getting
with God and how unfair it was of Him to allow this baby to endure so much
torture.   It felt like God was toying with them or teasing them when she
would get better so many times and then get worse again, but they agreed
that it wasn’t the time to be cursing God. . . they needed Him.  The funny
thing is, after all that upheaval in their lives. . . giving up their
jobs, their home, moving to the hospital, juggling their other 2 kids for
5 months, still trying to coach their little league from 90 miles away. .
.  the thing they realized when it didn’t turn out how they wanted was
that they still didn’t feel like it was time to curse God.  He had
bestowed upon them a great gift of 5 months with a most amazing little
girl and, this is going to sound funny, but He had proven himself to the
couple during those 5 months.  You say, "But she died?!?!  How is that
proof that God was with you and loves you?"  The answer to that is that
God answered their prayers in many different ways.  When she was coding
for those 12 minutes in March, they cried out for God not to take her.  He
listened and granted that request because it was an earnest prayer.  Many
other earnest prayers went up after that for her complete healing, but it
was when Jason and Heather stopped asking God to do what THEY wanted and
asked God instead to do what was best for Charli Anna that they felt His
overwhelming presence again.  It was after that prayer that God took
Charli Anna home peacefully while she was in the arms of her mommy.  And
because of Charli Anna, many lives will never be the same.

Now, Jason and Heather are using their unique perspective into the lives
of those who have sick children to start a new foundation in honor of
their dearly departed daughter.  The Charli Anna Foundation seeks to help
families experiencing long-term hospital stays by paying dislocation
expenses, offering spiritual aid, and many other services that only the
Merseal's or a family in a similar situation could understand. The mission
statement is as follows:
The Charli Anna Foundation is a non-profit organization that is dedicated
to helping families of children who have long-term hospital stays,
especially heart patient’s families,  by providing housing/hotel stays,
food vouchers, spiritual aid and many other services.  We wish to help
them overcome financial and dislocation burdens so that they may focus on
their child’s illness and recovery.  Through the Charli Anna Foundation,
we desire to broaden the legacy of our daughter, Charli Anna.  Though her
life was short, our experiences with her produced an enthusiasm in our
hearts to reach out to families who are experiencing similar life-altering
events.  We invite you to join with us in our endeavor to make a
difference in the lives of those who are encountering such a challenging
journey.