Her birth

On September 30, 2004 at 4:19pm, Molly Katherine Dunne entered this world followed moments later, by her twin sister, Kaitlyn Elizabeth. From the very beginning these two were quite the pair. We had no history of twins in our family and received the biggest shock of our lives on March 3 when the ultra-sonographer announced, “There are two in there!” Life from that moment on was never boring.

Molly’s traits

Molly’s smile and the twinkle in her eyes lit up every room she entered. Molly loved to sing and dance. She was also a fashionista. She insisted on matching her clothes to her barrettes and at one point, we had to install a latch on her closet door because she was changing her clothes so many times a day. Molly loved pink! She incorporated some form of pink into her outfit every single day without fail. Whether it was her perfectly manicured nails, to her pink monkey sneakers, something on her was pink. Molly was full of vim and vigor. She was spunky and she did not listen to the word “no.” Molly knew what she wanted and Kevin and I always joked that someday her strong and determined personality would serve her well …

Molly’s journey with PPH

On Monday, September 20, 2010, Molly and her twin sister Kate, started kindergarten. Their older brother, Ryan had been in school for a good three weeks and the girls had been asking every day if it was their turn to start. Finally the big day was here! Molly wore a brown dress with pink and brown flowered leggings and a pink bow in her hair. Kevin and I dropped all three kids off at the school and I ran home to get the girls’ asthma meds together for the school nurse while Kevin went on to work. Just a few minutes later, I was walking back into the school as my cell phone began to ring with the schools name showing up on caller id. I looked at the phone in puzzlement as I walked through the front door and all of a sudden, one of Molly’s teachers saw me and told me Molly had collapsed.

I remember running for the kindergarten building down the world’s longest hallway. As I got closer to her classroom, I saw several staff members standing around. I went into the room and saw Molly lying on the floor, looking at me as someone led me to a chair. The school nurse was with her and I was told paramedics were on the way. Molly didn’t speak; she just laid there looking slightly confused. I remember her eyes following me as I walked in.

Molly was transported via ambulance to the local children’s hospital in Delaware. She was admitted to the cardiac floor and the next day, a barrage of tests were done. One of the tests was an echocardiogram. During the echo, one of the cardiologists came in and took a look herself. She took us into a room and told us that Molly had Pulmonary Hypertension. A second cardiologist spoke with us that night. I don’t remember much of this conversation other than him saying this was “very bad” and that most people with PH live for two years. He also said they weren’t sure how we would treat this just yet and that Molly was a very sick little girl.

Molly suffers cardiac arrest

On Friday, September 24th, Molly woke up with the world’s worst cough. Molly appeared to be having seizure-like activity. We later learned this was a hypertensive crisis – which occurs because the blood pressure is so high in the pulmonary arteries, the lungs actually “clamp down” and oxygenated blood is not getting to the rest of the body. Molly was immediately taken to the CICU. Molly would need continuous IV medication to treat her extraordinarily high pulmonary pressures. A central line is an IV that goes directly into the heart. Molly was started on Flolan which is an extremely potent vasodilator.( Flolan has a half-life of three to six minutes, meaning if the infusion is interrupted in any way, in three to six minutes the medication is completely out of the body. This can result in hypertensive crisis, acute respiratory distress and even death.)

Not long after Molly was returned to the CICU, we learned she went into cardiac arrest. CPR was performed but they could not get her stable. Molly was then placed on ECMO also known as heart-lung bypass. ECMO allows the heart and lungs time to rest and heal by doing the work of pumping blood through the body and oxygenating it as well. A machine was breathing for her and we could see her blood pumping through the ECMO machine. Two nurses monitored her at all times. I also remember one of the nurses every few minutes taking a flashlight and shining it on the EMCO lines inspecting it for clots. Molly’s condition was dire. We did not know if she would survive the night.

Over the weekend, attempts were made to wean Molly from ECMO. The issue with being on ECMO too long can include major infection as well as other organ failure. It is usually not recommended that anyone remain on ECMO for more than two weeks or so. On Monday evening, the cardiologist who specialized in PH came to speak with us about Molly’s condition. He said that he had spoken to another facility and that Molly would likely need a heart/lung transplant.

Molly heads to Pittsburgh for treatment

Plans were being made to fly Molly to the Children’s Hospital of Pittsburgh (CHP) for further treatment and evaluation. As we were walking out of the CICU, the transport team arrived and we were able to stop and meet the team that would be caring for her during the flight. I was never so relieved to see someone as I was to see that team that day. The flight nurse took my cell phone number and promised to update us as they arrived in Pittsburgh. Kevin and I then rushed to the airport to catch our flight.

Molly had surgery on September 30, her sixth birthday, to place a hole in her heart in hopes this would relieve some of the pressure building up that was causing her heart to fail and to get her off ECMO. The surgery was not as successful as they hoped and Molly remained on ECMO. We spoke with the doctors and learned that we were running out of options and that things were not looking good. They told us about an experimental device that hadn’t been used much before but that they were willing to try it and that it was our only hope.

Molly becomes 2nd youngest child in US to receive a NOVALUNG

Molly was not eligible for transplant as long as she remained on ECMO. On October 2, Molly became the second child in the U.S. to be placed on an artificial lung called a Novalung. Molly was able to come off of ECMO. The Novalung took over the gas exchange and oxygenation for the lungs but her heart did all the pumping. While still risky, this was less risky than being on ECMO and she could remain on the Novalung for a longer period of time as we waited for transplant. Once Molly had stabilized on the Novalung, the medications that kept her paralyzed and sedated were lowered and we waited for her to wake up.

Molly did not respond as they hoped and we learned on October 14, that Molly had suffered a significant brain injury with damage to her basal ganglia and the occipital lobe. We were told that Molly would never walk, talk, see, eat or do anything like a normal child again. This also meant that Molly was not eligible for transplant.

Molly remained on the Novalung for 25 days. We had no idea what would happen once it was removed. We hoped her body had had enough time to heal and that her heart and lungs would function on their own. Molly went to the OR on October 26 and the Novalung was removed. Molly came through the surgery with flying colors and her heart and lungs continued to do their jobs. She began physical and occupational therapy. After three months in Pittsburgh, Molly was well enough to be transferred back to Delaware to be closer to home and undergo rehab.

Molly returns to Delaware

On December 20, Molly was flown back to Nemours|A.I. DuPont Hospital for Children. There she lived on the cardiac unit for three months while receiving in-patient rehab therapy. Molly’s physical therapist later told me that when she first was told about Molly she was told that Molly wouldn’t likely do much and that her main job would be to work her muscles, stretch her, and that was about it. She told me that once she met Molly, she thought she had the wrong patient as she could see that Molly was still “in there” and that she had potential. Molly worked so hard and began to come around more and more. Molly was soon standing, playing a piano app on her iPad, working on wooden puzzles and eventually riding a tricycle around the unit, and walking with a walker. Molly was beating the odds and proving everyone wrong! On March 30, 2011 after six months in the hospital, Molly came home!

There were times we weren’t sure Molly would survive, let alone, come home. Molly continued in out-patient rehab therapy for the next 14 months. Molly was talking some, eating by mouth, continuing to ride the tricycle, walking all over, even up stairs and generally astounded anyone who heard her story. In October 2011, we transitioned Molly over to IV Remodulin through her central line due to excessive side effects with Flolan. IV Remodulin is a similar med to Flolan but is known to have less side effects and has a half-life of two to four hours instead of three to six minutes. She was even receiving home bound instruction through the local school district two days a week. Molly continued to recover, she was cutting with scissors, writing her name, coloring and though her speech was limited she said new words each day and had no problem getting her point across.

Molly visits Disney World

In February 2012, we traveled to Orlando, Florida for Molly’s Make a Wish trip. Molly wished to meet Ariel in Disney. We spent a week at Give Kids the World. We did Disney, Sea World and Legoland. We accomplished something I was not sure we would ever do again, take a vacation as a family. Upon our return from the trip, Molly was showing more symptoms of disease progression. Her oxygen levels were lower, her heart was failing and her work of breathing was harder and harder. We began to meet with the Palliative Care team to discuss Molly’s comfort and quality of life. We found out that Molly was still ineligible for transplant and began to think about how best to help Molly live out her remaining time on earth. Many difficult conversations were had and plans were made for her care keeping in mind the needs of not only Molly but Ryan and Kate as well. On Mother’s Day weekend, Molly ended up in the hospital as she was complaining of her heart hurting. We were able to help her be comfortable by giving her narcotics and we signed on with hospice.

Heaven welcomes an angel

On Wednesday afternoon, Molly’s condition deteriorated and we gathered family and friends to say goodbye. Molly received a call from Miley Cyrus that evening. Molly was awake for the call and knew who was on the phone. Molly had always loved Hannah Montana and had hopes of meeting her someday. Miley had plans to visit Molly on Friday but unfortunately at 3:32 AM on May 17, 2012, Molly slipped away and joined all of the other angels and Jesus in heaven. Kate lay in bed next to her as Molly drew her last breath. They came into the world together and Molly left with her twin sister right by her side.

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