Adrenal Insufficiency, Blogging, Chronic Illness, Ehlers Danlo's Syndrome, Medically Fragile, Parenting, Parenting Advice, Special needs parenting

When You Are Raising a Child that May Not Live to be an Adult

One of the hardest things you will ever hear as a parent is that your child has a life threatening disease. When you receive the diagnosis, there is this haze that comes over you. I remember the day my son was diagnosed with panhypopituitarism like it was yesterday, and it was weird because I remember being happy that that disease was treatable. We were told that with the ongoing treatment he would be able to live, and in emergencies would require emergency injections to prevent his body from going into adrenal crisis. The treatment sounded easy, and after a week of him being on life support, it felt like an answered prayer. What I didn’t take into consideration was the toll the disease would take on his body, the quality of life it would give him, and the difficulty it was to manage the global disease.

Panhypopituitarism was the first of many diseases that popped up over the years. The crisis that provided us with the initial diagnosis damaged his heart. Because he was born prematurely his lungs didn’t fully develop, and he has had chronic and persistent asthma. He had trouble eating, swallowing, growing and gaining weight. At three years old he became a g-tube fed child. There were so many diagnoses piling on that I tried not to think about what it meant for his future. I knew that the total number of health issues could mean a premature death, poor quality of health, and physical disabilities. However, it wasn’t until I started working on paperwork with the county to get respite care that it hit me. His doctor had to complete a letter petitioning for increased services based on his health condition. In the letter, she listed his overall Prognosis as “Guarded.” It was the second prognosis from the bottom, and the only one worse was a patient that was terminally ill. His prognosis is that there is no expectation of his health ever improving and a decline is possible.

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The words that stuck out most “No Expectation of ever improving.” It was like I was swallowed whole in that phrase. He is not even five years old, and there is no expectation for his health ever to get better, and at any point, it could decline and lead to premature death. I don’t even know what to do with that information or how to process the magnitude of those words. The thought of burying my child is more than I can even bear. The continued on-going care of his disease seems daunting, and there are days I feel like his health condition swallows my entire soul. My job for the rest of his life – or my life – is to be his primary caretaker, nurse, mom, therapist, doctor, social worker, advocate, and voice. His health could likely preclude him from ever having any independence due to the substantial need he requires daily to stay alive. The enormity of this being our life forever hit me like a ton of bricks. I love my son with all of my heart, but I am heart broken thinking this is what his life will be for as long as he is here. There are no cures for any of his illnesses, and the treatments while effective are not fool proof. The amount of pressure I feel daily to make sure he is medically stable can feel like 10,000 lbs of weight on my chest. All I want is to be able to breathe, for him to be well, and to have one single day where we are not doing any medical interventions to keep him alive.

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When I itemize what we do on a daily basis to keep him healthy, it is overwhelming, and it makes me scared. I try not to think about the number of pills he’s taken since birth, shots he’s been given, surgeries he has had, food that has been delivered via his feeding tube, the gas that has been removed from his stomach, or the number of hospitalizations he has had due to his poor health. The reality of my life is if I woke up tomorrow and decided not to help him, he would be hospitalized or institutionalized for life. Someone has to care for him for as long as he is alive because he will never be able to do it alone.  I watch him struggle to play, grunt because he can’t breathe quietly pushing his toys, or run out of breath climbing a flight of stairs. We make accommodations to help him with wheelchairs, braces for his feet and ankles and our next investment will be a stair lift, so he doesn’t have to climb the stairs. He’s only 5, and it seems so unfair that this is his life. Even with the accommodations, his quality of life is still so much poorer than the average child, and I can’t help but feel enormously guilty that I somehow created this whole situation.

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We have had to make choices as parents to shield him from germs, and it’s meant his childhood is anything but typical. He wasn’t allowed to go to daycare as an infant per his doctor’s orders. The next issue was school. We attempted preschool for a year, but he picked up every single illness that passed through the hallways. Finally, it came to a point after a hospitalization; we realized he couldn’t be in public school because his body cannot handle the germs. Now instead of getting ready to go back to school, he and I will start our journey of finishing his last year of preschool being homeschooled. He will remain home schooled as long as his body remains too weak to fight infections. I know that if we send him to school, he will spend a lot more time in the hospital. By keeping him home, we can reduce his overall exposure to germs. I never wanted to be a helicopter mom, but I don’t want my son to die from catching a cold or getting the flu.

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The day he was diagnosed with a life threatening illness I was happy we could treat him. Today almost five years later, I finally realize the graveness of our situation. His life will never look like a typical child’s, and no amount of hoping, wishing or praying will change our situation. When I was faced with his prognosis of Guarded, I realized very quickly that I would have to remain diligent for the rest of his or my life to ensure he stays alive. While the weight of that responsibility is enormous, I know that I can and will do it because I love him. I just wish I had one minute where there was a break from the emotional toll it puts on my husband and me, and a moment where he can feel well. A wish I know that will never come true.

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There is a heaviness in my heart, sadness as I type, and I know there are thousands of other parents walking this same path right now. If you are reading this and are dealing with a child that is chronically ill and a reduced quality of life, please know I feel you, I understand, and you are not alone. We may not have many people that know our path, but sharing our stories is the best place to help others understand what magnitude of what it is like to raise a chronically ill child.

We want to know what you felt like when your child was given a grim prognosis. Comment below.

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3 thoughts on “When You Are Raising a Child that May Not Live to be an Adult

  1. My five year old son has struggled through ongoing challenges since birth, but we didn’t know why until we received his diagnosis via whole exome sequencing genetic testing almost two years ago. I was in no way prepared to hear the results we were given. Colton has a rare genetic disorder called pontocerebellar hypoplasia, which is considered terminal. Many children with PCH don’t survive past infancy. A quick Google search confirmed my worst fears, as I scrolled through horrifying descriptions of my child’s disorder. I couldn’t breathe. I was completely and utterly devastated. Since then, I’ve focused most of my energy on providing Colton with everything he deserves. Despite his terminal diagnosis, he is doing really well right now. I have so many fears, and my attitude fluctuates constantly, but I’m just so thankful to still have my little boy here to hold and love. I know tomorrow is never guaranteed, and I would give anything to change that. I hate watching my child deal with horrible dystonia, severe movements that battle his brain against his body, seizures, and all the other challenges he faces. But I know that he knows how loved he is and that his mama will always be here to love, comfort and help him any way I can. None of this is fair. It’s a heartbreaking road. <3

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