Stories

My Brother, Jarrett Peck, was diagnosed with Plastic Bronchitis in 2003 at the age of 5 years old. He was born with a congenital heart defect called, Double Outlet Right Ventricle. This is a condition where he was born without the left ventricle of his heart. At 2 weeks old he has a BT Shunt procedure. 

 

Hello, My name is Jarrett Peck. I was born on July 30, 1998, with a heart condition known as double outlet right ventricle.  Double Outlet Right Ventricle is a form of congenital heart disease where both of the great arteries connect (in whole or in part) to the right ventricle. Sounds complicated and it is, especially to a kid. To be honest, no one was sure I would survive, but I was born a fighter, "thank god!"

 

My first surgery was August 14th of 1998  when I was two weeks old.  My family stayed strong, said a lot of prayers and I pulled through.  It was truly a miracle in some people's eyes.

 

Nine months later, in May of 1999 I was back on the operating table for my first open-heart surgery. During this surgery I had repairs made to my heart, with hopes that the repairs would last until I was much older.

 

My aunt remembers my 4th birthday, which was to be a major event with party games and lots of family and friends to celebrate.  Well of course it was...after I fell and got a concussion which led to a life-flight helicopter ride! Boy, I thought it was so cool!  My family continued with the party(which turned into a "worry about Jarrett" party) while I was flown to Children's for a check-up and overnight stay.  When I got home I couldn't wait to finish opening presents and I was sure to tell everyone that "I got a helicopter ride for my birthday!"

 

Another open-heart surgery was scheduled for January 26th 2004 and it happened to be on my Nana's 50th birthday.  We thought "what a gift...a successful surgery which would equal good health for her grandson." If only things would go my way. This was around the time I was diagnosed with Plastic Bronchitis. My dad who is a respiratory therapist for years never even knew of this disease it was so rare!

 

After recovering from three surgeries and numerous hospital stays, it was time to get ready for Kindergarten. When I started school, it was another adventure for my family.  I was a rebel to say the least and was sure to cause enough problems that at times people forgot I was "so sick." Perhaps I was acting out, or perhaps I was making up for lost time spent recovering at Children's Hospital.  I was a handful, but am thankful for the teachers and family members who stuck with me and worked hard to keep me up-to-date with my school work.

 

My family continued to live in the Pittsburgh area, trying to cope with my condition which always seemed to be getting worse. The weather seemed like the worst culprit, especially as it became almost impossible for me to catch my breath. That's when the doctors realized something more was going on and I was soon diagnosed with plastic bronchitis on top of my heart condition.  I looked at it as another obstacle to overcome...just another thing to prove everyone wrong about.

 

Before I turned seven we moved to Hanover, PA which is in the Gettysburg area, since my father could make better money to help with medical costs and plus the better weather would help with my new lung condition.  I struggled with the changes this caused for my family but as always we "pulled together and made it through." 

 

After moving to Hanover, I have returned to Pittsburgh numerous times for testing, treatment, hospital stays and surgeries. It's complicated though...we have family in the area but not really close enough to Pittsburgh.  So while I spend most of my time in the comforts of Children's Hospital my family either has a long drive to a family members home or a Ronald McDonald house to check into. Thank goodness for organizations that help families like mine.

 

In July of 2009 I underwent my third open-heart surgery, which we hoped would be the answer to all my heart problems.  A pacemaker was put in to help regulate my heart and repairs were made to my fontan shunt, after all that I was to be in the best health ever.  However, shortly after surgery everyone realized that it could never be that simple.

 

During my first twelve years I  underwent 4 heart surgeries to repair "broken" areas of my heart. I also had shunts and stints placed in my heart at various stages in my life. As I got bigger/older my heart did not always do its job properly...therefore causing unforeseen problems for the doctors involved with my medical care.

 

Then it was decided that my heart would not always be able to support my life, therefore I was placed on the heart transplant list for Children's Hospital of Pittsburgh, which is located in Pittsburgh, Pennsylvania. For almost a year, I was "healthy" and had no major problems. However, after spending almost a month in the hospital, with my Mom and Dad by my side, I was moved to a status 1A on the transplant list. On March 15, 2011 it became official...I was now a priority!

 

On March 18, 2011, three days after the status change, I got the call that they had found a match!  I was going to get a new heart. Our miracle was about to come true! Family rushed to get to Pittsburgh in time to see me before surgery, some even stayed the entire night. The day I GOT MY HEART was March 19, 2011...a day I will always remember (even if I don't really remember any of that day). A couple days after my transplant my plastic bronchitis stopped happening! YAY!

 

So far so good! I knew this would be the fight of my life, but I was up for it...I want a normal life! After only 8 days in the CICU, I was finally strong enough to go "out on the floor." And after only a few short weeks on the eigth floor of Children's Hospital  I was able to start staying at the Ronald McDonald House with my mom.

 

After I had my heart transplant I "lived" at Children's and/or the Ronald McDonald house for a little more than one month. Which meant a lot of running back and forth for my dad as well as lots of missed hours at work and my mom and I "living" in a Ronald McDonald House.

 

Over the last few years after having my transplant I stayed multiple times in Pittsburgh to have biopsies done! I never had a issue and usually little rejection! Yay! Then COVID-19 hit, I was 21 years old. I had a job and worked at a MOD Pizza. Middle of March 2020 I was told I wasn’t allowed to work anymore and needed to stay home by the doctors because of my high risk for COVID-19. So I stayed home and relaxed, played video games, and just hung out thinking this will be over soon. I was scheduled to go to have another biopsy March 27th 2020 but it got canceled because of COVID since I wasn’t having any rejection and was so far out they thought I should be able to wait the month or so we thought COVID was going to last.

 

April 1st 2020 the worst day of my whole family’s lives. The day that no one will forget. I went to be and never woke up. We will never know what actually happened but, my family says they are so very lucky to have had me this long. But my sister, Alyssa, lives to tell my story and help raise awareness and help others that had my conditions.

Image.jpeg
Image (2).jpeg

My name is Anna Andreevna Selina. I am the mother of a wonderful six-year-old daughter, Selina Karina. Karina was born with a congenital heart defect that meant she only had one working ventricle in her heart. She was only 19 days old when she underwent the first of four open-heart surgeries at the Research Institute of Cardiology in Tomsk, Russia. The last operation was performed when she was nearly 3 and a half years old. 

 

Then, 3 months after that operation, another serious problem surfaced. Karina’s lungs filled with fluid and she coughed up a whitish, rubbery shape that looked like the branches of a tree — an image of the airways inside her lung. Doctors called it a bronchial cast. We live in the outback of Russia, in the Republic of Khakassia in Siberia. At that time, none of the doctors in our region could explain to us why this was happening. All kinds of emergency tests and examinations were done, but there was no definite explanation of Karina’s condition. With the help of the Internet, I found out the cause and the answer and I contacted the cardio center where Karina had her surgery for confirmation: “plastic bronchitis.” Karina would need to have the condition corrected — and before she could get a final needed operation to close the opening the surgeons had made in the last step of her cardiac surgeries. I was then told the words no mother ever wants to hear: “In Russia, no one can help you. This disease is incurable.” 

 

During the following year, we searched for various clinics, including abroad. Karina's condition only worsened. Her state of health reached the point that she had to lie down with an oxygen concentrator for three days and couldn’t cough up these large bronchial casts. Pulmonary treatment could not alleviate her condition or help her to cough them up. Twice the cast completely blocked lungs so much she couldn’t breathe at all. We were urgently taken to the hospital by ambulance, but the doctors were powerless. She had to look for strength in herself and cough it all up herself. Once in a correspondence in an online social group of mothers of children with a similar heart defect, a mother – whose child also has the same disease – responded. Together, we found Nemours/Alfred I. duPont Hospital for Children in Delaware and Dr. Maxim Itkin, who has been successfully operating on this type of disease for years. 

 

With the help of Nemours Global Health and a charitable foundation, our family raised the funds needed to fly to Delaware and have the necessary procedure. We flew to Germany and then on to New York just as Germany’s borders were closing due to the worldwide COVID-19 pandemic. We made it to Delaware just as the hospital was cancelling many visits and procedures. Fortunately, Dr. Itkin and Dr. Deborah Rabinowitz were able to perform the planned procedure. 

 

The doctors were able to close 90% of the abnormal lymphatic ducts that were causing Karina’s lungs to fill. She slowly recovered and I finally felt some relief from constant years of worry. When the swelling lessened and her condition improved enough, the doctors performed a second procedure to completely close the chest lymphatic ducts. A week later, Karina was discharged and we were able to get the last possible flight — as the pandemic worsened — to return Russian citizens from New York to Moscow!

 

Before the operation, the light in her eyes was dying out every day, and she was losing the will and strength to fight for her life. Now, after the lymphatic procedures, the shine in her eyes suggests that she is full of strength, energy, and the desire to live and enjoy every day. We are infinitely grateful from the bottom of our hearts to the management, staff and surgeons at duPont Hospital for their efforts, skill and desire to help us. It was just a miracle for us that our daughter could receive this life-saving treatment.

Read Previous Stories