The Importance of Children’s Hospitals

November 5, 2013

champions

By Amy Hackworth. Images by Kirstin Roper.

Imagine your daughter’s flu-like symptoms turn out to be something much more serious and within hours, you learn she’s in heart failure and will need a transplant. Or your little equestrian is kicked in the head by a horse one afternoon at the trainer’s and suddenly you’re only thinking of the next minutes and hours of her life, questioning the hope of coming days and years. Or imagine that a sudden bulge in your daughter’s cheek turns out to be an aggressive Stage IV tumor, the thing you feared most when you took her to the doctor.

Now imagine that as your world is being changed forever, as you are sobered and overwhelmed and frightened, your child is being treated at a facility that’s specifically designed for pediatric care — a children’s hospital that can meet all of your needs, from the best possible care for your little patient to the most supportive and helpful environment for your thousand-and-one questions and fears. As medical protocols and procedures become part of your everyday vocabulary, the children’s hospital where your child is being cared for begins to feel like home, and the staff begins to feel like family.

These are the stories I heard a few weeks ago when I joined the Children’s Miracle Network Hospitals on a trip to celebrate their Champions — a group of kids and their families (one from each state) who are heroes of bravery and courage. Morgan’s heart transplant was successful, and two years later she is the whirlwind of energy you’d expect any 5-year-old would be. Greer was fortunate enough to find the world’s foremost pediatric craniofacial expert at her children’s hospital, and less than a year after her accident she is literally back in the saddle, riding and competing again. And darling Jordyn is in complete remission now, looking forward to a baby brother in January and planning a career in medicine.

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These are just three of the stories I heard, and the forty-seven others represent thousands of kids across the country. Some of them have overcome a devastating injury or illness; others are still recovering. They’re kids who’ve gotten better, and some who won’t get better. Many of these children are in remission or fully recovered, and many of them will continue to face challenges everyday of their lives, but they keep up with their snowboard competitions, go to cheer practice, apply for college and pursue their dreams.

They are stories I couldn’t listen to without wide eyes and a few tears, and they are kids who amazed me with the bravery and joy that radiated from their brightest, happiest smiles. I learned so much from these kids and their parents about life, health, happiness, tenacity, attitude, faith, courage, joy, love and miracles. And I gained a new appreciation for the incredible role that children’s hospitals play in our communities. Receiving treatment at a children’s hospital means every aspect of your child’s care is being delivered by staff who are experts at caring for children—not just their medical needs, but their emotional needs, too. These families spoke about their local children’s hospitals with appreciation and reverence, and I can understand why.

I also learned that our communities’ children’s hospitals survive on charitable donations, most of which happen a dollar at a time. Children’s Miracle Network Hospitals alone provide an incredible amount of charitable care: $6500 every minute, which totaled $3.4 billion in 2012. That’s a lot of money! And that money is serving kids and families in significant ways, like buying needed equipment, providing funds for pediatric research, respirators and monitors for the tiniest of newborns, dedicated pediatric CT scanners, genetic programs to identify hereditary conditions, insulin pumps, and necessities like distraction toys for painful treatments and craft supplies and support programs, not to mention financial help for underinsured families.

All of those things are purchased with donated dollars, and there are so many ways to help! Those checkout donations at grocery or drug stores add up to billions of dollars each year, and go directly to the nearest children’s hospitals. Dance Marathon is a great way for high schools or universities to have an incredible time raising money for great kids. Families can also raise money by playing video, board, or outdoor games as part of Extra Life. You can create your own holiday fundraiser, too — a bake sale or art sale or babysitting service and donate the proceeds directly to your children’s hospital. Or simply join an advocacy group that will help you know when to reach out to legislators as they make key decisions about children’s health issues.

If you’ve had an experience at a children’s hospital, I hope you’ll share it, and your ideas about supporting and funding our communities’ children’s hospitals.

P.S. — You shared so many great ideas about supporting our friends whose children are in the hospital in this post a few months ago.

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CHAMPIONS 2013 - CHILDRENS MIRACLE NETWORK - kirstin roper photography | kirstin roper photography
March 27, 2014 at 3:18 pm

{ 34 comments… read them below or add one }

1 Sara November 5, 2013 at 9:26 am

Our son L had a double hernia surgery at a local children’s hospital here in the Midwest, and we’re so grateful for how wonderful they were throughout the entire process.

To give back and to show our thanks, my husband plays in a 24-hour gaming marathon every year called Extra-Life, which donates funds raised to local Children’s Miracle Networks.

We’re so grateful that our son is healthy!

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2 Amy Hackworth November 5, 2013 at 11:30 am

Sara, our oldest son had hernia surgery, too, at our local children’s hospital. We were so grateful for how wonderfully they treated us. To us, it was a big deal, even though it’s such a routine surgery. I so appreciated how the anesthesiologist loaded him into a red wagon to take him back to the OR.

Awesome that your husband plays in Extra-Life!

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3 lynette November 5, 2013 at 9:34 am

I was there too at their celebration! Those kids are amazing. CMNH is a true blessing!

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4 Amy Hackworth November 5, 2013 at 11:31 am

Amen! :)

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5 lynette November 5, 2013 at 9:35 am

I was able to attend the celebration for those children! It was indescribable! A-amazing! CMNH is such a blessing!

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6 Loni November 5, 2013 at 10:00 am

Amy, you are such a good writer. This was so poignantly said and so very inspiring. It could have been such a downer post, but you made things sound positive, optimistic and so very hopeful. What inspiring young children, for sure. Because of this post, I will definitely be making a contribution to this incredible charity.

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7 Amy Hackworth November 5, 2013 at 11:32 am

This is very sweet of you, Loni. Thanks. They really are a great charity and the work they do matters so much!

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8 Deanna Planitz November 5, 2013 at 10:31 am

My son, Jordan, is the 2013 Champion Child for Illinois. He is one of the 50 kids referred to in this story. He has big brown eyes and always a smile. He has a rare syndrome. Only 9 cases in the world. Unfortunately, he is terminal. I will never see my little boy grow into a young man…..graduate, get married, drive a car, hit a homerun. I am grateful, however, for each and every day I have with him. I thank both God and CMN Hospitals all over the country that we have traveled to for cures and numerous surgeries and our local hospital rehabilitation center. If it weren’t for them my child would not have walked across that stage on his own accord to accept his Medal which he so richly deserved. If it weren’t for those speech therapists there I wouldn’t have woke up this morning to those brown eyes looking up at me saying “I Wuv You”! That is the reason I participate in Dance Marathons, Radiothons, Walmart Campains, Dairy Queen Treat Day, etc. I am truly grateful for CMN Hospitals. And I am truly blessed to be Jordan’s Mommy……even for a short time……..

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9 Amy Hackworth November 5, 2013 at 11:34 am

Oh, Deanna. Thanks for your comment. Yours is definitely one of those stories that brings us to tears. Your Jordan lit up the room every time I saw him, and I’m touched at your sweet appreciation for every day with him.

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10 Kim Gourley - Iowa (Jordyn's Mom) November 5, 2013 at 10:57 am

Thank you for your beautiful words!

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11 Amy Hackworth November 5, 2013 at 12:00 pm

Thanks, Kim. Love to you and Jordyn!

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12 Tanya November 5, 2013 at 11:03 am

My youngest son was born in a Children’s Hospital of Philadelphia. When I went for my 22-week ultrasound, they discovered that he had a serious heart problem that would cause death within a week of his birth, but the super awesome doctors at CHoP took care of him (and me!) and made everything so much easier! It was SUCH a relief to know that the surgery and post-op was a straight-forward process, and there were so many people to guide us through it. The nurses at NICU were so amazing (one of them told me that one of the criteria of getting (and keeping) a job there was that you had to be a nice person).
Every time we have to go back for checkups (and eventual second and third surgeries, as my son outgrows his transplants), I keep sending a prayer of thanks for everything – the technology that allowed for early detection and surgery, for the amazing doctors and nurses and techs, and for the fact that Children Hospitals exist.
My thoughts go out to all the parents and children who are currently dealing with issues that bring them to Children Hospitals.

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13 Amy Hackworth November 5, 2013 at 11:36 am

Thanks for sharing your story, Tanya. I didn’t know you could deliver in children’s hospitals–wonderful. The nurses and doctors really are such an incredible gift, and it makes perfect sense that being nice would be a job requirement! Best of luck as you continue this journey with your little guy.

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14 Gregg Cofield November 5, 2013 at 12:34 pm

Amy,
It was a pleasure spending time with you at Disney. Your words in this article are so true. People are constantly asking Shannon and I if we are tired from staying so busy spreading the word about Children’s Miracle Network Hospitals. The answer to that question is “yes we are tired” but this organization is so important to our family we always seem to find more energy. I really appreciate you taking all if our words and creating one of the best articles I’ve ever seen about Children’s Miracle Network Hospitals!

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15 Amy Hackworth November 5, 2013 at 2:03 pm

Gregg, thanks so much. What a nice compliment. I loved meeting your family and hearing about your dedication to spreading the word (on the racetrack and at lots of other places). And of course I was so inspired by yours, Shannon’s, and your daughter’s bravery, faith and miracles!

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16 Emily November 5, 2013 at 1:36 pm

Such moving stories!! Thanks for reminding us all of different ways we can help, especially during the holiday season!

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17 Amy Hackworth November 5, 2013 at 2:04 pm

Thanks for pointing that out, Emily. It’s a great time of year to be thinking of helping others!

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18 Susan Marks November 5, 2013 at 1:50 pm

After 3 extra-healthy kids, and many years teaching natural childbirth to dozens of couples, my fourth child was born with an intestinal birth defect that threatened her life. She entered our local children’s hospital at day one and didn’t leave for 98 days. It became the center of our life for those three months. As I tell my friends, “I don’t care if I ever have to go back there, but I sure am glad they were there for me when I needed them!” From the first nurse’s aid to the last surgeon, we were treated honestly and with great care. Thank heavens for the great folks that make up the children’s care network in our country. And I hope they can survive the disaster that faces our health care system and come out the other side as competent and caring as they were then.

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19 Amy Hackworth November 5, 2013 at 2:05 pm

98 days! Amazing, Susan. I’m thankful, too, for these great people who are doing such amazing work!

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20 Julie DiBona November 5, 2013 at 3:27 pm

Hi Amy! What a beautifully written piece of work! My daughter Brooke is the 2013 Champion from MA. Having a child diagnosed with cancer was completely devastating! Thank God for Children’s Hospitals and for Children’s Miracle Network Hospitals for not only saving my daughters life but for helping to save our family as well. It takes a huge toll on the moms and dads and siblings. From meals to toys to counseling they offer it all! Never mind the researchers who tirelessly work to find new ways to treat diseases and find cures. I could go on and on about our positive experiences. Thank you for bringing this very important cause to the attention of your fans! By the way, it was a joy to speak to you and your sister, she is in my prayers:)

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21 Amy Hackworth November 5, 2013 at 5:14 pm

It was so wonderful to meet you, too, Julie. We continue to think about your family’s story and what a great, great mom you are. Thanks for you kind words!

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22 Miggy November 5, 2013 at 6:55 pm

I could write a lot about this so I’ll try to keep it brief.
With our second daughter we were very, very fortunate to live near one of the best children’s hospitals in the country in Cincinnati (who knew?). My husband was doing a 2 year residency there and it really felt completely serendipitous that if we were going to live anywhere and give birth to a child with very rare anomalies, we were very fortunate to live there. Everything from early prenatal visits, to postpartum care, surgeries and many, many specialists, and even therapy was all done through that amazing hospital. I can’t tell you how well taken care of we felt there–especially during that very crazy first year.

We moved when she was a year old to Texas. As we navigated the military medical system we were finally lucky enough to be referred to a Children’s hospital in Dallas. For my daughters specific condition this. was. the. place. I had been so nervous about our first visit and the minute we walked through the door it was like we were transported to another world. Since my husband couldn’t go that first time I remember coming home to tell him all about it–how great it was, how smoothly it ran and how wonderful everyone who worked there was–from the Dr’s to the janitors. I finally said, “I feel like I just visited the Emerald City and the Wonderful Wizzard of Oz.” I really can’t say enough good things about the work these hospitals do.

Anyway, I LOVE that you wrote this post, and truthfully I feel guilty that I haven’t done more in the way of fundraising. It honestly never crossed my mind. But like you said, these hospitals run on the generosity of others and I am so grateful they do. I’m going to think about ways we could be of more support to these wonderful institutions.

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23 Amy Hackworth November 6, 2013 at 9:59 am

Miggy, thanks so much for your comment and your story. I was amazed at how many other families had an experience similar to yours–THE person who was best qualified to help their child was at the hospital where they received treatment. From heart transplants, to craniofacial issues, to specific types of cancer, I was just amazed at how often the perfect specialist was at their local hospital. Really incredible.

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24 Nikki Taylor November 5, 2013 at 6:59 pm

Amy! What a beautiful story to honor our Champion Children and the AMAZING work done at all of the CMN Hospitals. Our daughter Emma was on this amazing trip as the 2013 GA Champion. She has been diagnosed with a Mitochondrial Disorder that she faces head on every day of her life. Currently there is no cure and in most cases the disease is progressive. We have been so blessed by our Childrens Hospital in Augusta GA and even more blessed by all the amazing Champions and strong families who shared all of their stories with us. Each Champion story all different with one big connection CMN Hospitals. I can not thing of a better more hard working organization — Thanks again for writing this!

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25 Amy Hackworth November 6, 2013 at 10:02 am

Oh, Nikki, Emma just shone everywhere she went! I have the sweetest picture of her on the dance floor, LOVING LIFE. She’s really inspiring! Thanks for your comment!

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26 Nathan Larson November 5, 2013 at 8:39 pm

Hi! My name is Nate and I work at Children’s Hospital at Dartmouth-Hitchcock. I was recently involved in the CHaD ROAR project (http://bit.ly/19uV1eZ) with an amazing group of creative professionals, Child Life Specialists, kids, and staff. The video was created as a thank you to fundrasiers involved in CHaD HERO. The fact that this video has gone viral allows us to talk to a much larger audience about CHaD HERO, which is our single largest fundrasier of the year and directly impacts over 60,000 children. In addition, the video has opened up communication with hospitals and families around the world who are all sharing their inspiration and support. Their stories make you realize that we are all in this together. Thanks! N chadhero.org/roar

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27 Amy Hackworth November 6, 2013 at 11:04 am

Nate, thanks so much! That video is so great, and totally made me cry. Congrats on such a successful project!

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28 Sarah E. November 5, 2013 at 8:54 pm

At this moment, my husband and I are at the Children’s Hospital in D.C. with our son, who was born eighteen days ago with a congenital heart defect that wasn’t discovered until moments after he was born. I think it goes without saying that his birth day was a terrifying day for us, but we are so grateful for the kindness and patience of all the staff here; we feel like they’ve taken care of us almost as much as they’ve taken care of our son. He had life-saving open heart surgery at five days old, and the only way we’ve been able to really keep it together is because from day zero we’ve known that he’s in the best hands, and knowing that they’ll continue to look out for him throughout his life — which now has every chance of being as long and as full as anyone else’s. Thanks so much for this!

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29 Amy Hackworth November 6, 2013 at 10:01 am

Oh, Sarah, lots of love to you and your husband. I’m so happy your baby is in good hands and the prognosis is so hopeful. It’s wonderful to hear again that you and your baby have been cared for so well by the staff.

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30 Lisa J. November 6, 2013 at 6:00 am

Beautifully written Amy! Just perfect and so inspiring. I am forever grateful to have been your tagalong!

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31 Chris November 6, 2013 at 8:15 am

Oh Amy this has been on my mind a lot so thank you for the post!

I have had the opportunity to get involved with my local children’s hospital by donating some design time to help with poster, t-shirt design, etc for their yearly fundraiser, the CHaD Hero. As I worked on the project, I better understood the importance of this money that was being raised. The hospital has red wagons that they pull the kids in between treatments. They have a play room stocked with games, toys, DVDs or maybe they need to download a favorite song to help a patient settle in or sparkly band-aids! Of course, the money goes to more than just buying stuff but what may seem like small things, amounts to money that needs to come from somewhere.

I also had the opportunity to work on the Chad Roar video that Nate mentioned in the comment above. I was blown away by these kids, their parents, and the staff and this video and the world-wide reception has given a power and voice to these people.
It is a sacred place of care and healing and I better understand the reverence you talk about in your post.

My kids haven’t had to be admitted but knowing that a place like that exists and is close to us is incredibly comforting. My family had a team and we ran in the CHaD hero and raised a few hundred dollars. It isn’t much and I’d like to do better next year but I have seen where that money will go and how much some stickers and a ride in that red wagon means to these kids.

I could go on but will stop now. Here is also a link to a blog post I wrote about my experience making the video.

Thanks again for this post
http://www.youtube.com/watch?v=lnG3MKos87A

c

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32 Jill Maas November 6, 2013 at 3:58 pm

Hi Amy!

Thank you so much for the beautiful article and helping to bring attention to what Children’s Miracle Network Hospitals does for sick and injured children in our communities. My daughter, Ashlyn, has the incredible honor of being the 2013 Pennsylvania Champion. I’m so proud of her and so proud to be part of an organization that does so much good not only for the children, but for their families as well. Before we needed them, I didn’t understand how important they were. So thank you for helping to bring to light how important our member hospitals are. Without them, I am convinced my sweet little girl would not be here.

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33 Miranda November 8, 2013 at 5:12 pm

What a beautiful summary of these incredible families and the hospitals that have helped them, Amy! I am so happy you were there to hear their stories. You captured them beautifully.

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34 Valerie November 10, 2013 at 10:08 pm

We’re veterans of the Monroe Carrell Children’s Hospital at Vanderbilt and The Children’s Hospital of Philadelphia–glowing places with some of the best people on earth who helped our children heal and feel cherished.

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