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427 days waiting, a Berlin heart, and a new lease on life.

Updated: May 11, 2021

When this interview was conducted, it was in Spring 2020, the beginning of the COVID-19 pandemic. Kim and her son Liam are living in Montreal and Liam had just been interviewed for the local news station. His message for the reporter was clear, his normal was now everyone else’s normal. He says that if you are stuck at home and confined, don’t worry about it, transplant recipients do this all the time. He acted well beyond his years as an advocate for his community in the interview, encouraging others to stay home because the virus was potentially dangerous to those that immune suppressed. The Morris family currently lives in the province that has been the hardest hit in Canada.

Liam has been interviewed quite often and is known throughout the province and the country. As with most transplant kids, they are a celebrity in their own right.

When Kim’s son was born he looked like any other baby. One day, while at daycare, he started feeling nauseous and overall unwell. She would bring him to the clinic every time and every time they would tell her it was a stomach bug and that he needed rest and to stay hydrated. Eventually, Kim got sick and tired of the repetitive diagnosis and took him to the Emergency Room of Montreal’s Children’s Hospital. Right away the cardiologist came to look at him and ordered an echocardiogram. He came back saying that her son was very ill and that treatment would be a long process. The team assured her they would do everything they could to save him. It was very much an overnight situation of having a healthy child to one that is near death.

For the first 6 months, they thought he had myocarditis. They initially thought he had a virus. But then the diagnosis came back as Dilated Cardiomyopathy of the Left Ventricle. He also had very violent ventricular arrhythmias. There were more genetic tests done. Liam has three genetic mutations. LMNA gene is the first mutation. This can also be the cause of muscular dystrophy.

They tried to stabilize him over the month with Milrinone and dopamine. The dopamine helped him stable for a month. After that, it didn’t work anymore. They couldn’t stabilize him and they were losing him.

Liam was quickly placed on the Berlin Heart. This device beats for the heart giving it a chance to rest. She noticed an immediate difference when the Berlin Heart went in. Her immediate reaction was how pink he was. She said he was such a beautiful color and so warm. Just putting her hand on the Berlin and feeling how warm it was from the blood and literally feeling his heart beating in her hand was surreal. She always had this odd reassurance that he was being kept alive by this device and that he was no longer dying.

He got his Berlin in August which is his birthday month and then a month later he had two strokes. For the first one, there were two nurses in the room and his mom, the nurses, and Liam were gently kicking a soccer ball. She noticed that at some point during this, Liam seemed like he was made out of wax and was melting and he just couldn’t hold himself up anymore and fell to the floor. Luckily the nurses were right next to him and grabbed him to prop him up and bring him back to the bed. He was paralyzed and he could no longer speak. After the stroke, Liam who was kind and caring seemed to stop caring about life. He would lie, not listen, started hearing voices, and was, in general, a different person altogether. After that, the hospital stay was incredibly difficult. From being in the hospital so long he started to almost lose his mind from it all.

He spent a full year on the Berlin heart. They were in the hospital for a total of 427 days. During this time he had 2 strokes, one pump malfunction, and finally a transplant in July of 2018. Liam is a negative crossmatch. In his case, he got a perfect match for a heart.

Liam was in the hospital for 10 days after the transplant. For the entire time he was there he told everyone that he was getting his heart for his birthday. When he was released after the transplant it was on his birthday. The first thing they did after discharge, was going to a 5-star restaurant in Montreal so that he could have lobster, king crab, and Rockefeller oysters, and Crepes Suzette, for dessert. The restaurant treated him to the whole nine yards. That night when Kim tucked Liam into bed she was starting to reflect to Liam and she said, “What a nightmare we have just been through.” Liam stopped her and said, “Mom this isn’t a nightmare. Usually in nightmares people die. Nightmares don’t end well”. Her favorite souvenir was to tuck him into his own bed.

Now Liam is back to his fun-loving self. It took a long time. Immediately after they were so burnt out and tired. This past summer is the first time that he is feeling back to his normal self.

In the future, Liam aspires to be a surgeon and tries to get the best marks he can. He is is an avid reader. He rides his bike and plays tennis with his mother. He almost associates high blood pressure that comes with exercise with heart failure. But he is learning to overcome that with time.

Families tend to fall into one bucket or another. What doesn’t break you makes you stronger. You definitely value life more. Sometimes life can be difficult but you move beyond those challenges to live your best life.

Kim refuses to be a victim and defined by the worst of what happened. Liam is a victor and this is just part of their story.

The best piece of advice for other transplant parents: Don’t be afraid to ask for help. Don’t try to do it all. You need the help of a lot of people. Make sure you eat three meals a day, get some fresh air, and get psychological help for yourself. If you aren’t well, your child won’t heal. You need a good plan for self-sustaining.

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