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 3:21am.   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 heartwrenching  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 February 25th, 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 escaping from 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 PICU.    

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.   A social worker at SLCH told Heather about the Erika Kate Foundation and Heather decided to apply for the money to replace their air conditioner.  The Foundation granted that request and the family was incredibly grateful.  Also, 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 with Charli Anna.  

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.   

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, people keep asking Jason and Heather why they’re not falling on their faces in grief and they keep trying to explain that it’s just a God thing.  They also tell people that Christians aren’t meant to grieve as those with no hope should grieve.  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 because of Charli Anna, they will never be the same.  

Charli Anna's story was submitted by the Merseal family.

To learn more about Charli Anna, visit www.caringbridge.com/visit/babycharli.