Denelle is a strong supporter of provisions in the Affordable Care Act, including protections against being denied health insurance because of pre-existing conditions, annual and lifetime caps. If lifetime caps go into effect, Denelle’s son, Matthew (BTW the meaning of his name is ‘gift of Yahweh’), will max those caps by age three because of the surgeries and medical care he will need. Because of a strep throat, her daughter, Aslyn, has renal complications which is considered a pre-existing condition.
What is your passion in life?
At my core I am quite liberal on most any subject; it is always my goal to help and not to hurt. I believe that healthcare is a right – no one should be denied care they need, nor should it financially destroy a family or be the reason you can’t afford your medication or medical care.
What was life like before 2016?
I was working weekends at the hospital and my husband was a private chef at Pi Lam, a fraternity at Penn State. My son had started kindergarten and my daughter was in daycare one day a week. Life was just moving along. Then we decided we wanted to have just one more baby!
And how did your life change in 2106?
I remember the day I was told about Matthew – it started with “We don’t know what the sex of your baby is; your baby could be both boy and girl.” That was in March 2016. We had Matthew on May 6, 2016, and he was born with a sexual development disorder. He was ultimately transported to Janet Weis Children’s Hospital and was in the NICU for two weeks. After a lot of tests, we were given Matthew’s diagnosis. He has 46 XY Gonadal Dysgenesis which would require two to three extensive surgeries beginning June 16, 2017.
I have good health insurance through the hospital I work for, but because of Matthew’s diagnosis he qualified for Medicaid. Thank goodness, as some of his genetic testing was not approved by my insurance. After a two week stay in the NICU and two to three extensive surgeries, Matthew could very easily meet a lifetime cap, or be denied insurance or care because of pre-existing conditions. Matthew may require lifetime hormone replacement therapy or other healthcare needs into his adulthood.
In November 2016, Aslyn, my daughter, who is four, had strep throat. She developed a rare, severe complication called Post-Infectious Glomerular Nephritis with crescent cell formation in over 50% of her kidneys. She was essentially in kidney failure, and was very close to needing dialysis. We had three admissions to Janet Weis Childrens’ Hospital during which she had a kidney biopsy, received high dose IV steroids and IV blood pressure medications.
We continue treatment to this day. She takes three daily medications, gets blood work monthly, and sees a pediatric nephrologist every other month. Aslyn also is required to maintain a low sodium diet – do you know how much salt is in 32 bite sized goldfish crackers or one slice of bread? I have to and she does too! Aslyn now has a pre-existing condition and may need specialized treatment into her adulthood.
Did being a nurse make it easier or harder? How did you keep it together?
Believe it or not, in hindsight, my biggest challenge came while I was pregnant – the question of “what are you having” was so difficult at the time. Having my patients ask such an innocent question left me crying in a bathroom a number of times because at the time we were living with a huge unknown.
Aside from obvious financial challenges – through taking time off from work, normal family activities and maintaining a work-life balance, we have taken things one day at a time and did it together with love.
My husband Chad has been my rock. He is my eternal optimist. When I thought things were bad or when I was having an emotional day, he was there to remind me that no matter what, things would be ok. Many people would ask how I could keep things together and put on a good face. I didn’t always. I saved that for my husband, and for my mom, they could tell you I’m not a rock, more like a squishy marshmallow. Every mom has those moments when they don’t know how they will continue when their world is falling about.
I also cannot go without saying something about my family, my co-workers, and the brothers of Pi Lam at Penn State University for donating time, funds and gifts for my children that helped get us through a tough time. It was through their love and generosity that we were able to take care of our kids. I also have to thank HOPE, an amazing non-profit in Centre County, and the Ronald McDonald House at Geisinger in Danville. Our family is so thankful for their help.
I learned that as a nurse I should have a care plan and that dreaded care plan came back to haunt me. I read, and I over-read and eventually, I had to put a stop to this, and, at times, stop being a nurse. I needed to just be a mom, truely allow myself to just be a mom. I started taking things day by day or the worry was consuming.
Being a nurse helped in that I really need things to be explained without a sugar coating. When doctors were told that I was a nurse, the conversation became more clinical and professional and allowed for more back and forth discussion and more fluid communication with me, which for me was necessary.
How did your priorities change? How did your outlook on life change?
I remember thinking how lucky I am to have good health insurance, and for my son to be assisted by Medicaid. One of my daughter’s medications would have emptied my bank account if it were not for my insurance. And make no mistake, as a mother, I would have emptied my bank account in a heartbeat for her.
This entire experience has certainly put life into perspective. I often tell people how humbling it has been. I am now a fierce advocate for quality care and the groundwork made by the Affordable Care Act, a fierce advocate for my children, and a fierce advocate for my patients. My drive to maintain what we have improved in healthcare, as a result of the ACA, has never been higher.
What my husband and I never thought possible walked right through our door – I had not one child with a major medical condition but two, both within a relatively short span of time. Having healthcare needs in our family be so tangible and raw makes you wake up and pay attention.
I was utterly glued to the TV when the recent vote for the new healthcare plan was happening, I was nauseated by the thought we could lose things gained by the ACA and thank goodness we haven’t. But the fight continues, especially with the passage of the American Health Care Act through the House.
You have come out as a strong supporter of the ACA. You have done more than the average person. Why?
I wrote letters and called my legislators multiple time. If we are silent, if we are complacent, we lose things that we as a people need. Our children need good healthcare, as do all people. Our legislators would not otherwise know how people are affected by legislature they sign unless we are telling them our stories, stories like mine.
I continue to fight for others because I have been asked by patients if certain medications are necessary, if they can go without them, what medical supplies can be reused since they aren’t covered or are too expensive. This should be unacceptable in our society as a whole. I continue to fight for my children so that when they are my age, and continue on their health journey, they can receive the care they need with appropriate health care coverage.