By Ann Leghorn
My sister’s life was forever changed during the winter of 2011, when she and her husband went for a regularly scheduled ultrasound while pregnant with their first-born child and was told their baby was critically ill and would need multiple lifesaving procedures. This was the first of unending life altering news in their new family’s life. On July 1st, 2011, Asher Levy-Dahl, was born at 8:48 PM in Maria Ferrari Children’s Hospital in Westchester, NY. As soon as he was born, the medical adventures began.
Although Asher’s family knew he would have some surgical needs after the fetal echocardiogram showed he had several congenital heart defects and complex Heterotaxy Syndrome, they never expected the insurmountable medical obstacles he now faces. The birth defects were just the beginning of what is now an ongoing battle with several rare chronic illnesses, including Congenital Heart Disease, Heterotaxy Syndrome, Hydrocephalus, and Primary Ciliary Dyskinesia.
Initially, the fetal echocardiogram showed Asher’s tiny heart contained eight congenital heart defects. The cardiologist told Asher’s family he had 4 holes, 2 ASD’s, 2 VSD’s, coarctation of the aorta, partial anomalous pulmonary venus return in which 2 of his pulmonary veins are draining to his coronary sinus, interrupted inferior vena cava, and an unroofed coronary sinus. These congenital heart defects resulted in a massive 17-hour surgery on his little walnut sized heart when he was just 2 weeks old. As he healed in the Pediatric Intensive Care Unit (PICU), his family sat by his bed side watching his tiny heart fight for its life while he was in a medically induced coma with his chest cavity still open due to swelling. Five days after the initial open heart surgery he underwent another surgery to close the chest cavity.
Another of Asher’s major lifelong illnesses is Heterotaxy Syndrome. There are 16 babies born a year in the United States with Heterotaxy Syndrome. Of those 16 babies, less than 15% make it to their 1st birthday. Asher is one of the fortunate 15%. Heterotaxy Syndrome occurs when the internal organs form in different areas than they normally do and results in a variety of medical issues. For Asher, this has created a malrotation of the intestines and bowel; right sided stomach; midline liver; and seven spleens, none of which function to the capabilities of an anatomically average spleen. This has resulted in a diminished immune system and constant bouts of illness during Asher’s 5 years. To address some of the issues that Heterotaxy created, Asher underwent an hours long LADS procedure when he was just 18 months old. The surgery fixed the malrotation and placed a permanent feeding tube in his stomach to provide nourishment and medicine.
Asher also faces the problems that come with Hydrocephalus, an illness in which the water around the brain cannot absorb or drain properly leading to pressure on the brain. As with all of Asher’s medical diagnoses, this diagnosis has come with many complications. Asher underwent an endoscopic third ventriculostomy while simultaneously placing an Ommaya reservoir in his brain in hopes to avoid the placement of a shunt. Unfortunately, two weeks later it completely failed and Asher needed emergency surgery to place a VP shunt in his brain. This was only the first of 8 more brain surgeries that were needed to fix numerous shunt malfunctions. Asher’s ninth brain surgery was just yesterday, January 6th, 2017, and he will need countless more brain surgeries as he continues to grow. Currently, there is no cure for Hydrocephalus and the only treatment requires invasive, life-threatening brain surgeries.
Asher’s other major disease is Primary Ciliary Dyskinesia, a progressive lung disease that causes an excess buildup of mucous in his lungs which leads to excessive respiratory illnesses such as pneumonia and upper respiratory infections. This is exacerbated by his severe asthma. Because Primary Ciliary Dyskinesia affects all the cilia in the body, Asher also suffers from frequent and severe ear and sinus infections. Thus, he has had his tonsils and adenoids removed as well as four different sets of tubes put in to try to stop some of the ear infections.
In just 5 short years, Asher has faced unbelievable odds and continues to beat them all. Much to all his doctors’ surprise, he laughs and plays like any average child. Underneath his silly façade, lies a medically complex and fragile child who will need many more painful and life-threatening surgeries and procedures. None of Asher’s diagnoses currently have a cure and can only be maintained through further surgeries, medical procedures, and invasive intervention. Asher’s mother and father have been by his side every moment of his tumultuous journey and thus now need financial assistance. Because of all the therapy and doctor appointments, Asher’s mother is unable to maintain a full-time job and had to leave college, leaving only Asher’s father to earn money for their family, including Asher and their 19-month-old daughter, Quinn.
My sister and her family have spent the past 5 years battling alongside their son and have never asked anyone for help. Through all of this, they have strived to maintain normality for their family. Now I am asking you to donate to help them pay for some of the medical costs and life costs that come with being parents of a medically needy child. Asher’s parents will never be able to pay off all of Asher’s medical bills because they continually grow as Asher’s needs escalate and change, resulting in more surgeries and hospital stays. Any money you donate will help cover excessive medical costs, their apartment, necessary and expensive repairs for their minivan to ensure safe and reliable transportation, gas for the frequent trips to doctors, hospitals, and specialists, and give Asher and his little sister a chance to have a fulfilled life with their parents.
To donate, click >>here.<<<
This story is part of OMG I Got A Letter series curated by Gelli. Gelli partnered with Crowdrise to help raise funds for people/charity groups in need. Every month, we’ll feature at least one story that needs sharing. The writer nor the blog host gets commission from this. This is pure charity. Aside from monetary contribution, we also welcome letters of encouragement from people like you. Let us know in the comments section what you want to tell Asher and his family. We’ll make sure he reads this! Thank you for your help.
I have a personal theory about painfully ill people on their deathbed. That is, they seem to have a burst of energy right before they die. It's weird to witness it first-hand because you're there thinking, is this chronically-ill patient really getting better or is his death just ticking soon? I don't know about other nurses, but experiencing this scenario more than once made me a believer of one last chance.
As a Christian, I believe that there is life after death. And these things, as I see it, are moments worthy to be cherished. I have this patient before, let's just call her 1; she deteriorated as soon as she talked to her family. Hours before that, she could barely speak, and open her eyes. It's only minutes when she opened her eyes, conversed with her family, then eventually died. Minutes. Maybe it's a rush of hormones. A gush of adrenaline high. Like when you watch fireworks during 4th of July and the biggest and most stunning display marks the end of it. Who knows?
Maybe it's a rush of hormones. A gush of adrenaline high. Like when you watch fireworks during 4th of July and the biggest and most stunning display marks the end of it.
There's another one that I can recall. He doesn't have any family nor friends. Just us. Nurses, and other healthcare team. He wasn't even seen by the doctor when he passed away. I can remember him packing his things, washing his face, and telling everybody that he's ready for whatever procedure we're going to do to him. There was none, actually. He was suffering from sundowners, so we just ignored his actions. Around midnight, he died in his sleep. Peacefully. Like everything he did that day were for that last hour. I mean, if you know your time of death, you'd want to clean yourself right?
His story is actually familiar with my grandma's. My grandma's death was unexpected. One day, she was just taking a shower, slipped, hit her head on the floor then died because of the impact. That part was excruciating for us especially because we weren't there when she died. I was at school, and my parents were abroad. That week, though, was exceptionally weird. She kept telling us that she dreamt of grandpa, telling her to come with him. Backstory: My grandpa died while on sail. Gone after a typhoon hit the island, assumed dead afterwards. So her telling us her dream was kind of odd. One, because the dream is odd. And two, she doesn't really share her dream. She even mentioned that she dreamt of my dead cousin, too! Could you believe that? It's creepy, and at the same time, reassuring. I was at peace knowing that maybe, just maybe, they are already having a reunion over there.
Let's face it. We won't really know when our time will come. But until then, let's do the things we really want to do, and hope that before our last deed on earth, we did something worth living.