Proud parents, Lori and Ernie Emerick were so excited when their third child, Arielle, came into this world at a whopping 2 lbs 15
ounces. She spent her first 31 days of
her life in the hospital, coming home at just 4 pounds 2 ounces. From that moment on, everyone knew she was a fighter.
At the Age of 3, Arielle was diagnosed with developmental delays and a speech disorder and was enrolled in the PPI program. After testing at the Van Riper Clinic in Kalamazoo, she was diagnosed with Apraxia and a learning disability. While attending 1st grade at Wenzel School, it was suggested that children with Apraxia could improve their learning with the use of sign language. Arielle’s elementary teacher, Mrs. Yunker and educational assistant, Mrs. Hout, attended evening classes at the ISD with the family to learn sign language. They did this on their own time. Over the next 3 years Arielle used sign language to help communicate her answers for school work and testing. During this time, she also worked almost daily with Mrs. Hoffelder to improve her speech. Arielle continued her speech therapy through middle school and by high school she worked through her Apraxia and was able to be understood by everyone.
Arielle did not like her learning disability to get in the
way of accomplishing her goals. She would spend 3 hours on homework that would
take another classmate 30 minutes to complete.
Arielle enjoyed her weekly Girl Scout meetings and loved the friendships
it built. Junior Achievement was a place
where Arielle learned what working would be like. She enjoyed it so much that she worked at the
Salvation Army Store the next summer.
When Arielle had two more years of high school left, her father's job moved the family to Hot Springs, Arkansas. Arielle had a good attitude and was excited to attend a new school the following fall. During the summer, the family would go on walks in the woods around our house. One day while she was walking, Arielle became short of breath and her lips turned blue. The family doctor found Arielle’s thyroid levels were abnormal and started treatment. Arielle was also scheduled to see an Endocrinologist at the Arkansas Children’s Hospital (ACH) in the upcoming months.
Around the first week of August 2010, Arielle came down with what appeared to be a cold or flu. By the time school started, she was not feeling any better, even after antibiotics. She attended her first day of school then missed the entire following week. After she went back to school, she started feeling worse and had three weeks before her appointment to see the specialist at ACH. After two weeks of sleepless nights and vomiting when she coughed, the family doctor sent her for an echocardiogram. Three hours after the test was done, the doctor told Arielle's mother, Lori, to take Arielle straight to the ER at Arkansas Children’s Hospital. It was discovered that the left ventricle of Arielle’s heart was pumping at a mere 10% capacity.
Arielle was admitted to the Cardiovascular Intensive Care Unit (CVICU) and told us she had Congestive Heart Failure. The doctors started treating her heart with an IV medication, Milrinone, to increase her heart's ability to pump blood. They had no answers to the cause and started running tests. Arielle's parents were told most likely a virus or due to her hypothyroidism. After genetic testing and karyotyping, Arielle was diagnosed with Turners Syndrome, which was probably why she became hypothyroid. The family doctor already started medication to get her thyroid under control and her levels were normal within a few days. The doctor said that with the thyroid under control her heart could get better.
The doctors weaned her off the IV medications and started an
oral medication to see if Arielle could be treated at home instead of the
hospital. Arielle was scheduled to go
home on Wednesday, 12 days after she was admitted. On Tuesday, the day before she was to go home,
Lori stepped out of Arielle’s room for a few seconds to tell a hospital
employee that Arielle was vomiting. When her mother came back into the room she found Arielle face down on the floor
unconscious. A code was called and Arielle's mom (Lori)
was escorted out of the room. Arielle
was carried back to her bed and was conscious within a few minutes. The cardiologist then told the parents that her heart
was not going to get any better and Arielle needed to be put on the transplant list as
soon as possible.
The first step of the transplant process is to have a heart
catheterization to check pressures within the heart and a biopsy. After given
sedation, her blood pressure dropped significantly. Her heart was weaker than
the doctors had originally first thought. The cardiologists told Arielle's parents that while awaiting a new heart, she may need the Berlin Heart to keep her
alive if she did not get a transplant soon.
Arielle was listed as a 1A on the UNOS (United Network for Organ
Sharing) list 13 days after she was admitted in the hospital. This is the most crucial listing for a heart transplant. Arielle's parents were told it could be months before a
heart would be available and to prepare for a long wait. The doctor had them sign the consent for the
Berlin Heart, asking the FDA to allow ACH to use it if it became necessary to
keep her alive until a new heart became available. The device is not yet
approved for use in the US, but the clinical trials are almost done and FDA
approval for the device was pending. The
FDA approved the use of the device for Arielle if it was needed. Arielle remained in stable but critical condition
and her parents were ready for a long wait.
“I can’t believe work is calling me to come in,” he thought. He picked up the phone and said “Hello”.
Then on the other end, “Hello Mr. Emerick, this is Dr. Garcia from Arkansas Children’s Hospital.”
“What’s wrong?” he asked. “Nothing is wrong, but we have a good donor heart for your daughter Arielle.
" Do you still want to proceed with the transplant?”, said Dr. Garcia.
“By all means proceed with the transplant!”, said Ernie.
Ernie then looked at Lori, her eyes were wide open. Lori said “Do they have a heart?”
This was the call both of her parents had been praying for. All they could do for the next 60 seconds was hold each other and cry. They got to the hospital and were informed that they had not told Arielle and would get her up at 5 AM and prep for surgery. Ernie sat there, watching her sleep, knowing that a fresh new start for her was right around the corner.
The First Transplant
At 5:45AM, Lori asked her,
“Arielle do you remember what we said had to happen for you to get better?”
Arielle said “Yes, I need to walk and eat right.”
“There is one more thing honey” Lori said.
Arielle thought for a moment, “I need a new heart?”
“YES! And today you are going to get one” Lori said.
“I got a heart?” Arielle said.
“Yes, you are going to get your new heart!”, said Lori.
The parents walked next to her as she was being wheeled in her bed to surgery. At the double doors, they kissed Arielle and told her they would see her when she wakes up. Arielle looked at Lori and said “I got my miracle” as she went through the doors. Lori and Ernie were told her surgery would last 5 to 12 hours so they should settle down in the waiting room for a long wait. Arielle’s surgery was done in 3 hours and 10 minutes. They told them that everything went perfect and the new heart started on its own, without any help from the doctors, before she was taken off bypass. Arielle's old heart was so enlarged that it made the placement of the new heart much easier as there was enough room in her chest cavity to allow for swelling, which is common after a heart transplant. This allowed the doctors to sew up Arielle's chest cavity which they presumed would speed up her recovery time.
Arielle found out her heart was sick and got a transplant 26 days later. Arielle's body tried for a little over a year to accept this new heart. Arielle should have been released to home isolation for 6 months to prevent her from getting sick while her immune system is at its lowest due to her anti-rejection medications. Due to complications, her home isolation was lengthened.
There where strict rules that needed to be followed while Arielle came home after her transplant. She was to be on Isolation for a planned 6 months. This started with no one being allowed to come over to the house except the family members living in the house. Arielle was not allowed to leave the house except for check up appointments. Shortly after getting home Arielle has been allowed to continue her schooling at home. Two teachers came to teach Arielle at home during the evening. Arielle had home work to do every day and spent the first 2 to 4 hours completing it. The teachers brought more than books to the house to teach her. To help Arielle complete her science and math projects they brought teaching equipment to the house. Arielle loved being able to do her work and looked forward to the time her teachers would come.
We were then told that Arielle could go on walks with us outside and that she could be around people outside, with a mask on. Arielle’s first outside experience was at her new church. It was a night of trunk or treat in the church parking lot. She got to give out candy and even do the cake walk. She got to visit with other people.
During Arielle’s Isolation she had time to look up things that would help her live with her new heart. Her first thought was eating healthy. She started looking up heart healthy eating on the internet. During her search she found a wonderful resource thru the Hungry Girl Web Site. Arielle soon found out that Hungry Girl also had a cooking show on television and got all of her cook books. Thru Arielle reading these books and using the web site she helped her mom change the eating habits for the whole family. Arielle then told us about a book signing that Hungry Girl was having in Memphis Tennessee. Arielle was given permission to go to the book signing but she had to wear a mask to protect herself. At the book signing Hungry Girl talked for a few minutes at the beginning and had people ask questions. She then started signing her book. The line was long and we knew it would take a couple hours to get to her so we were going to sit and wait. The Arielle and her Sister Hannah noticed that two girls walked in after Hungry girl started her talk. Arielle thought they looked like girls from the cast of the new Nickelodeon show Victorious. After Arielle and Hannah got the courage to go ask the girls if they were, they found out they indeed were from the show. Then for almost 2 hours all four of them talked. Arielle got to share her story about her new heart and Hannah got to ask them questions about their life and career. Most of all Arielle got to tell them about Turners Syndrome. After most of the people got their books signed, Arielle finally got to meet Hungry Girl. Hungry Girl told Arielle she knew about her story because mom Lori had emailed her. She signed Arielle’s books and they took some great pictures. This was a trip that both Arielle and her sister Hannah will always remember!!
It was the end of the school year before we knew it. Arielle was still doing her school work at home. Arielle was asked if she could come to school at the end of the year and receive an award given out by the school. Arielle received the eleventh grade HEART OF THE LION AWARD. This went to a student who strived to do well in school during times of hardship and trials. The Lion is the mascot of her school, the Jessieville Lions.
During the summer Arielle was allowed to go to church with a mask on. She even got special permission to travel by car to Michigan to visit family and friends over the Fourth of July. She spent most of the time with her cousins Paige and Courtney and even spent the day with her best friend, Khala. It was a great time for her and our family!
The Battles During Isolation
One of the battles that Arielle faced was rejection. Arielle went into rejection a couple times during the year. The doctors would adjust her medication to treat the rejection and bring it under control. The biggest battle was due to cytomegalovirus (CMV) in January 2011. Most people have been exposed to this virus at one time or another in their life. Exposure to CMV allows your body to build up antibodies known as a "titer" to CMV. It is thought that patients with titers may be at a lower risk of developing CMV infections during post-transplant but this is not always true. Arielle did not have a high titer to CMV. This is was due to no exposure to CMV before her transplant. Her heart carried the virus but her body didn't carry the antibodies to fight off the virus. This is one of the downfalls of a heart transplant, but there aren't any other options when their daughter is so sick with heart failure. During the primary fight with the CMV, Arielle was admitted to the hospital for treatment. After around 14 days of treatment for CMV in the hospital, Arielle was sent home. The family could then continue the IV treatments of gangcylovir for her. After 5 more weeks of treating Arielle for the virus is was brought under control. Arielle’s transplanted heart was going in the correct direction. Arielle was still to be on Isolation for the rest of the 2010 and 2011 school year
The new school year was about to begin and they released Arielle from isolation. She now gets to go to school and can do things like watch a movie in a theater or eat in a restaurant. One of the hardest parts of this journey was over for her.
Arielle enjoyed school like most kids enjoyed amusement parks. Part of Arielle’s school day was to go to Abilities Unlimited (a great workplace for those with disabilities). Arielle enjoyed doing work there so much. One day when she was there Arielle’s mom and dad went for a tour of the place. Arielle’s supervisor showed them around and they were amazed at how the workers were enjoying and very proud of the jobs they were doing.
Then they were directed to where Arielle was. Arielle was inspecting parts (her supervisor explained that due to Arielle’s attention to detail they had her inspecting parts). They watched for a moment as she sorted the bad parts from the good ones. When Arielle notice her parents they she jumped up with a big smile and then showed them around. Arielle was proud of the people and what they did there. She told her parents she liked it there very much.
also got to make new friends in school.
She was able to go on school outings with her classmates and birthday
parties. Arielle even started bowling
practice for the Special Olympics. The
family went to home football games where she would enjoy saying hi and talking
to the different people she knew. She was so proud of where her life was
going! Yep it’s going to be a great senior
year she said.
At Arielle’s one year check up a test is done by shooting dye into the heart arteries and veins. When this test was performed it did not go well. It showed her larger arteries were clear but the smaller vessels and capillaries where not taking the blood from her arteries to her heart (Coronary Artery Disease). This would eventually cause damage to her heart. She would need another transplant again. This could have been caused by many different things, high cholesterol levels from anti-rejection drugs or the CMV. The doctor told us she could suffer a heart attack at any time and not feel it since the nerves were cut when they did the first transplant. They did not know how long it would take for the disease to progress and started monitoring her weekly. They then put her on the transplant list as a 2 status, October 21, 2011.
Arielle continued life as she knew it. She went to work and to School with everyone’s knowledge of her condition.
Again we started seeing signs of Arielle getting sick like the year before. We knew what to expect this time and she was being watched closely by her doctors. Arielle was very upset “why do I have to go through isolation again!” She was not worried about the surgery or the getting a new heart. She didn’t want to go without seeing her friends at school or work. So Arielle’s teachers and mom made every effort to let her do every class outing and to get involved until she could not longer do it physically.
Arielle go too sick to remain at home as was admitted to the hospital, October 27, 2011. She was started on heart medication and was listed as 1A status on the transplant list. After 1 week we were informed that since Arielle turned 18 in July she would be listed as an adult. Therefore her status will go down to a 1B while she was in the hospital. For the first 2 weeks we knew what to expect.
Then one day Mom went home to be with Arielle’s sister and let dad stay with Arielle for the night. Arielle soon had to use the restroom so her nurse helped her while her dad waited outside the door until they were done. As dad waited outside the door he heard the nurse yell “DAD WE NEED YOU”. I walked in and Arielle was not breathing and had turned blue. The nurse told me to make sure she did not fall and hit her head and pulled the code button. In 20 seconds there were 3 doctors and 10 people in her room. Her dad had already picked her up and placed her in bed. Dad stepped back with tears flowing down his face to allow them to work on her. In about 5 minutes they told dad they needed him. When he went in Arielle was awake and was asking for him. When he got there she asked him what happened. He said you passed out and they wanted to help you. Without even a thought of what truly happened she looked around and said “all these people for me”. Dad smiled and said yes you are very important to every one of them.
Arielle was put into the Cardiac intensive care unit. Arielle’s mom stayed in the Hospital with Arielle most of the time with Grandma giving her a break for a night or two. Arielle was in the hospital for about 4 weeks now and her medications were increased so she could be stable. But Arielle was going into a depression now. She missed her classmates, the friends she made at work and church. She learned how to Skype with people using her iPod touch. Her school class and her church youth group would Skype with her. You would see her smile as she talked to them. But afterwards she would miss them even more. She had many people sending her cards and emails. She loves reading them. As time progressed we found out that with her being 18 this puts her on a much larger transplant list. This wait could be much longer than the first. This put Arielle in a deeper depression. Arielle’s physical health was getting worse. We talk to the doctors about our options if her heart gives out before she gets a donor heart. She can be put on Berlin heart pump if needed. This will pump the blood throughout her body so vital organs can receive the oxygen they need. After being in the hospital 54 Days it was decided, after tests showed kidney function was not as good as they wanted, the Berlin Heart pump would be needed to keep her alive and other organs in good condition.
The surgery was done December 20, 2011 and took about 11 hours. The first 48 hours are the most critical with high risk of bleeding and stroke. Because of the risk of bleeding, the surgeon decided to leave the chest cavity open (with a sterile occlusive dressing over it) to watch for bleeding. If there were to be heavy bleeding, it would be easier (less stress for Arielle) to go in and fix it. The staff kept her heavily sedated to keep her still and comfortable.
On December 23, 2011, the surgical team closed up Arielle's chest. Due to bleeding, she received 5 units of blood. The tubes are a constant reminder that every day is battle to survive. Every minute is borrowed time. The Berlin Heart is just a temporary bridge to her future heart transplant. The wait for a new heart is excruciating and stressful, but with God by our side, we continue to be patient for a perfect match. We thank
the Lord everyday for the doctors, surgeons, nurses at Arkansas Children’s
Hospital and the inventor of the Berlin Heart Pump!
On January 03, 2012, Dr. Frazer announced that they had found a match for Arielle. Almost 16 months to the date, we were in the same shoes getting Arielle's first heart transplant. The feelings of emotion overwhelmed us, but at the same time we knew that somewhere a family was grieving. For their family member had passed and gave our daughter a new heart. This was the best gift anyone could ever give to another. I only hope that someday the donor family will want to read the letter we wrote them that expressed our gratitude at the sacrifice that was made to help others live, like our Arielle.
Ernie was the first to spot the cooler in the hallway. Could this be the moment we have been waiting for? Every minute we waited seemed like eternity. Finally, we were told the news we had been waiting to hear! Arielle was taken into OR where a surgical team prepared her for her new heart for the second time in less than a year and half.
Around 9:30pm we were told the heart was here. Our brave girl was going to have another Re-Birthday! At 10:36pm they were still sewing in her new heart and a few hours later, she was off the by-pass machine. They kept her chest open to check for bleeding. On January 4 they closed her chest. She is resting comfortably without pain. She seems to be doing well so far.
Our battle is far from over, but the first hurdle has been passed and we are forever grateful to have reached this pinnacle. Once again, God has carried us through the storm. We are forever indebted to our Lord for the multitude of blessings he has showered upon our family.
--------------Stay tuned. To be continued.
For more updates, please visit Arielle's FACEBOOK FAN PAGE.
Please consider becoming an Organ Donor so that you could help a children like Arielle.