In the week and a half we had between our visit to CHOP and our scheduled appointments at Hopkins, we did what every parent does and began researching CDH on the internet. There were thousands of stories, both successful and tragic, and we realized quickly that no CDH story was the same. We were intrigued by a blog about a boy in a neighboring town that was a six-year-old CDH survivor who was born at Hopkins. It caught our eye because he was born on our due date of October 9th and he played in the same soccer league and wore the same jersey as Brody last fall. We reached out to his family and learned, that although he is surviving CDH, it is not without many trials and tribulations as he remains on a feeding tube, requires oxygen at night, and has a nurse around the clock to help monitor his daily intakes. Even though he has had a few setbacks and lingering issues, he functions like any other six-year-old boy as he attends school, plays sports, and is very active. His story gave us hope, but in all honesty it also scared the hell out of us.
The worries were endless and no matter how many questions we ask, the direction in which we should proceed remains unclear. Our number one priority is Brody and no matter what path we take, his life will be impacted drastically. If we terminate, Brody will never have the chance to be a big brother because we have decided (at this point) that this will be our last pregnancy regardless of the outcome. If we see this pregnancy through, we will not know until then how he will handle the change and the impact it will have on him, as he will also be adjusting to his first month of kindergarten. Since no CDH story is the same, it is impossible to know the quality of life and future for our baby boy if he survives his first days, months and years. We know that some of the long-term issues include chronic lung disease, asthma, gastroesophageal reflux, developmental delays and ventilation requirements due to prolonged hospitalization. The majority of survival cases found online are children under the age of ten and stories of adult survivors are rare making it hard to truly know what he will endure in his life during his older years. Finally, the financial burden this could put on our family is unpredictable. Although this should be our last concern, there could be extensive medical bills due to lengthy hospital stays, surgeries, medication, and medical treatment needed throughout his life. With a mortgage and other monthly bills, it is scary to think about the financial impact this could have on our lives if our insurance does not cover the majority of his medical expenses.
Never did we think we would be analyzing both our health insurance and life insurance, as no matter how much we want to hope for the best, we must also prepare for the worst.
The worries were endless and no matter how many questions we ask, the direction in which we should proceed remains unclear. Our number one priority is Brody and no matter what path we take, his life will be impacted drastically. If we terminate, Brody will never have the chance to be a big brother because we have decided (at this point) that this will be our last pregnancy regardless of the outcome. If we see this pregnancy through, we will not know until then how he will handle the change and the impact it will have on him, as he will also be adjusting to his first month of kindergarten. Since no CDH story is the same, it is impossible to know the quality of life and future for our baby boy if he survives his first days, months and years. We know that some of the long-term issues include chronic lung disease, asthma, gastroesophageal reflux, developmental delays and ventilation requirements due to prolonged hospitalization. The majority of survival cases found online are children under the age of ten and stories of adult survivors are rare making it hard to truly know what he will endure in his life during his older years. Finally, the financial burden this could put on our family is unpredictable. Although this should be our last concern, there could be extensive medical bills due to lengthy hospital stays, surgeries, medication, and medical treatment needed throughout his life. With a mortgage and other monthly bills, it is scary to think about the financial impact this could have on our lives if our insurance does not cover the majority of his medical expenses.
Never did we think we would be analyzing both our health insurance and life insurance, as no matter how much we want to hope for the best, we must also prepare for the worst.
