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“So we constantly try to remind them (doctors) that she is here to teach all of us new lessons about medicine. That maybe it is time to incorporate all types of human beings in medical procedures and research so one day when my children are older, our society can say yes it is possible, it can be successful, look at Amelia Rivera.”

- Chrissy Rivera

Joe Chrissy Amelia Rivera

From left, Chrissy, Amelia and Joe Rivera

On September 24, Special Olympics had the honor of welcoming Chrissy & Joe Rivera to a dinner event we hosted with the Golisano Foundation during the annual meeting of the Clinton Global Initiative in New York City.  With the words above, and her entire story shared below in her remarks from that night, Chrissy is spreading her message: Don’t let another family go through what we had to go through just to get Amelia the same care as other children without disabilities.

As Chrissy spoke, tears fell.  But more importantly, hearts were lifted and minds were inspired.  “What can I do to make sure this never happens again?” was the most common question I heard people asking themselves.  Exactly the question Chrissy, Joe and Amelia want everyone to be asking.  A first step toward success.

Congratulations to Chrissy, Joe and Amelia for sharing your story. The courage it takes to stand before the world and share such a personal story is truly admirable. To do so in service of others is heroic.

-T

UPDATE: Here is today’s USA Today story on the Riveras.

EDITOR’S NOTE:  Please look for Chrissy & Joe’s story in the online version of USA Today this weekend, and in the print version next week.  We will update this post when a link is available.  Pasted below is the text from Chrissy’s remarks at the dinner in New York on Sept 24 as referenced by Tim above.  Please read and share.

From the very beginning and even before birth, Amelia fought for her survival using our voices. Glitches on several ultrasounds prompted the weekly question from medical professionals, like “Are you sure you want to keep this baby?” Every week we would say yes and every week they would ask again. This question laid the groundwork for a battle that we could never imagine. A week after her birth and the diagnosis of Wolf-Hirschhorn syndrome, we were given the option of transferring to either the DuPont or CHOP (Children’s Hospital of Philadelphia). I asked what was the difference to a random doctor giving us the choices. He said both are great. Dupont is more touchy, feely and personal but CHOP is one of the best hospitals in the world. And so the decision was easy at the time because who does not want “the best” for their child? Overall, and despite our experiences in Brick Walls, we received great care at CHOP but there were instances that made me question my decision about not choosing the more personal hospital.

For example, at one point Amelia needed cleft palate repair. A standard medical procedure. A young doctor at my consult, said “Why are you even taking the risk if she may never eat by mouth or talk. You can leave her palate open. It’s no big deal.” I blurted out my research about chronic ear infections, possible aspiration in the lungs and my hope for her to one day talk. And then I ended it with a question that surprised him. “Would you do the surgery if this were your child?” And he immediately responded YES.

Meeting adjourned.
Surgery scheduled.

This was often the approach we would take when dealing with specialists who didn’t think Amelia was worthy of procedures that were never questioned in other children. For the first three years of Amelia’s life, there was a lot of crying and arguing on my part at a lot of these specialists appointments. There were little things like therapies, feeding clinics and even eye glasses. None of these were life threatening but all of them were services offered to other children and I demanded they be offered to her.

We never took no for an answer.

And each of these little battles was preparing us for the war we would soon face. When I wrote “Brick Walls” I wrote it with the intention of maybe ten to twenty people reading it. I wasn’t aware that the Intellectually Disabled were still being denied lifesaving operations. I knew during that meeting we were simply going to appeal the decision to the ethics committee.

Fortunately for us, social media did a great job sharing our story. Within several days members from the ethics committee were in our living room wanting to discuss what happened that day. All I had to do was tell my story. But even today, after many meetings to assure us that they have Amelia’s best interest at heart, we endure comments from doctors like, we are not sure why she is not responding to a certain medication, we have never transplanted “anyone like her.”

So we constantly try to remind them that she is here to teach all of us new lessons about medicine. That maybe it is time to incorporate all types of human beings in medical procedures and research so one day when my children are older, our society can say yes it is possible, it can be successful, look at Amelia Rivera.

A question a lot of people ask us is how can you stay with CHOP? Don’t you want to be somewhere that “wants” to treat your child? The way I look at it, if CHOP wants to be ranked and rewarded for being the best than they are going to do it by treating “ALL” patients equally. When Joe and I talk about the infamous meeting where Amelia was denied the transplant, we ask each other scary questions that always make me cry. What about the moms and dads out there who believe and trust everything their doctors tell them about their disabled child? What happens to those children whose parents think they have no other choice but to believe what the doctor says. What if we were those parents who walked out? Our Mia, our baby girl, would not be here today.

Instead she is home, listening to her bedtime story read to her by her brothers snuggled up on the couch with a working and healthy kidney.

And that is why we stay with a hospital who told us to let our child die because her quality of life would never amount to anything. We do not stay because we receive excellent medical care but we stay because we demand it. If we run to another hospital, we are letting this absurd behavior continue. I cannot change all of the medical professionals about their feelings towards patients with intellectual disabilities, only the ones I meet.

I think it’s important to tell you that most of Amelia’s doctors have been kind, caring and compassionate. Our pediatrician told us at her first visit, “She is beautiful and she is your baby, don’t ever forget it!” Our first nephrologist said, “Let her make her own milestones in her own time!” And during our darkest days after Brick Walls, there was that one doctor who came to our house on a snowy evening and shared his personal experience about his brother who had Down Syndrome and the struggles his own mother endured fighting for medical care on a daily basis. This same doctor sat in on every meeting after that whenever I asked him to even though he was never required to be there.

I don’t have a concrete solution to change the stigma that exists in the medical community. I wish there was an easy answer I could give you. But I feel a lot better about Amelia’s future and children like her, knowing that there are organizations like Special Olympics and groups of people like all of you here in this room and support systems like Tim Shriver who reached out to our family to let us know that we were not fighting this battle alone.

2 thoughts on “Help the World Hear Their Story

  1. You are both Amazing parents. My brother is Mentally Retarted b/c of a birth defect caused by the nurses holding my mom’s legs together with the baby was coming b/c the doctor wasn’t there yet. Kenny is amazing and wonderful and wasn’t suppose to live pass the age of 5 and he is now 56. Both of my parents have gone now and I am left to take care of him. I will not put him in a home for he belongs in his home. I have several medical challenges of my own and my husband left me after 30 years saying he was tired of being a care taker and now I am trying everything I know to get him all the help he needs and while doing so I couldn’t get the help I need and now am faced with bills I can’t afford, severe house repairs and possible forclosure and it’s a constant challenge. Kenny is getting the medical help he needs now due to me not taking no for a answer but I live in fear everyday how to buy groceries, pay bills and take care of a house that is falling apart and the money to take care of me and health insurance. Kenny is worth everything I go through and he is a Angel for sure. Your story is inspiring and I keep pluging away everyday to get what he needs and try to make sure the lights stay on, the bills are paid and he gets his medicine but one person who has multiple health problems herself makes it hard to get the help I need to keep taking care of him and make sure he has what he needs. Kenny and I have basically been abandoned by my x-husband of 30 years and our 2 daughters,20 and 28. I never have felt so alone but I pray constantly and do all that I can humanly possible and make sure he gets what he needs. There is so much that needs to be done but I can’t afford it and I can’t seem to take care of the major problems my self like, foundation, air and heat needing to be replaced, cracks in the house all over and so much other things along with possible foreclosure. I can’t work and only get $800.00 a month from ex-spousal support and I stretch it out to the penny. Anyway kenny is so loving, bright in his own words, loves his sister to a fault and is one of the kindest big kids you could ever meet. You are both inspirational to me and I think Amelia is a very blessed young lady to have such devoted and loving parents and who support each other and for your family to have this Angel sent from God to your family to care for and love. Thank you for the inspiration.

    Many Blessings,

    Karen Arndt Bush & Kenny Arndt

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