Gastric Bypass: Hope for Alexis - Cincinnati Children's Blog

Gastric Bypass: Hope for Alexis

Two and a half years ago I gave my daughter Alexis a kiss as she was wheeled into an operating room. The doctors told us that the surgery to remove a non-cancerous brain tumor called a craniopharyngioma would likely result in rapid weight gain after surgery, but nothing could have prepared our family for what was to come.

Alexis woke up from the surgery hungry and she’s been hungry every moment since then. It’s impossible to know if the tumor itself damaged her hypothalamus or if it was the surgery to remove it, but the hunger-regulating function of her brain went haywire.

We all thought we could beat it because we knew about it and expected it. But no matter what we tried, she still gained weight. I kept telling her that we just needed to figure out how to make it stop, but nothing worked. Each time we went to an appointment with one of her doctors I would see the scale go up. I expressed my concern with her weight gain over and over, but we’d already tried everything that was suggested to help.

I started to lose hope that we would find a way to control her weight gain. Each day it seemed like there was something new that was hurting Alexis or she’d discovered something else she could no longer do.

We stopped going on bike rides as a family because Alexis couldn’t physically ride her bike. We were no longer able to “stay and play” when we visited with friends because Alexis was in too much pain to be up and about.

Since the surgery, Alexis has gained an average of 2 pounds per week due to hypothalamic obesity. She has also developed several other serious health conditions as a result of the damage to her hypothalamus and the significant amount of weight that her little 12-year-old frame is carrying.

The weight gain is relentless, but so is my dedication to finding something to help Alexis. Last summer, through a registry for people who have hypothalamic obesity, I learned about gastric bypass surgery as a treatment option.

After a lot of discussion with Alexis, we decided to see Dr. Inge at Cincinnati Children’s.

Here’s part of a Facebook post that I wrote after our first appointment with the Surgical Weight Loss Program for Teens: “Well, I can not describe the feeling!! A Dr. and team that really “get it”. They understood everything about hypothalamic obesity. I felt like finally someone takes this as serious as I do. Alexis loved the hospital and so did I. We got everything done that they need for now and now we have to wait.”

That visit was the first glimmer of hope that we’d had in a long time. It felt good!

Unfortunately, a battle with our insurance provider came shortly thereafter, but with the help of some amazing media coverage and the support of thousands of strangers, our insurance troubles were resolved and we are in a position to make this surgery a reality for Alexis.

This Friday, March 21, 2014, Alexis will have the Roux-en-Y gastric bypass surgery, along with a vagotomy (removal of part of the anterior vagus nerve) to help reverse some of the miscommunication that is happening between her brain and her digestive system.

We realize that this is not a magic bullet kind of thing and we know that there are risks associated with the surgery, but we are confident that it is worth the risk. Everything we’ve tried has failed to control her weight. If we don’t do anything, her weight will continue to increase and eventually my child will lose her life to the weight.

This surgery, we hope, will give her a fighting chance.

I hope this Friday will be the beginning of the end of all of her pain and insecurities. I hope she won’t have to endure another day feeling like she is starving. I hope she will be able to think about fun things, not just when she will get to eat next.

This surgery will be a success in my mind if we can achieve a better quality of life for Alexis. I hope that she will be able to get around better and not be the object of staring anymore. Her sister and brother look forward to her being able to play with them again. I would like for her to have the opportunity to be a “normal” kid, teenager and adult. And more than anything, I hope the surgery will result in enough weight loss that she isn’t in constant pain. She has endured so much already.

She is excited about the surgery, but nervous. So are her dad and I. We hold so much hope for the future. We know it is going to be hard but we will be with her every step.

My daughter is a caring, loving and brave kid. I’m proud of how she’s handled everything that has happened in the last couple of years. She’s mature beyond her years and I want more than anything for her to be happy.

So, here’s to Friday. We hope you’ll keep Alexis in your thoughts!

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Jenny Shapiro

About the Author: Jenny Shapiro

Jenny and her family - husband Ian and kids Alexis, Kayley and Ethan - live in Cibolo, Texas. Through her daughter Alexis's experience with hypothalamic obesity, Jenny has become an advocate for Alexis and kids like her who have the often misunderstood condition.

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  1. Christy Miller March 19, 16:46
    We live in Cibolo as well and we are praying for all of you.
  2. Jamie Faulkner March 19, 18:10
    I'll be thinking of Alexis on Friday and I hope all goes well. It is a wonderful hospital and she will be taken care of. I hope that this gets her to the next step of recovery! Thinking of you and your family.
  3. Tresea Hill March 19, 18:36
    Good luck friday. I will keep u in my prays Alexis.
  4. Amy Earle March 19, 19:07
    My family will be praying for your family! I hope all goes well and can't wait to her the updates, I am hopeful this will help! We live in Cibolo as well... If there's anything we can do please don't hesitate to contact me!
  5. Kaitlyn Barton March 19, 19:11
    There are many prayers coming your way from Midland Texas. You are an inspiration Alexis. Stay strong!
  6. Stephanie Caplan March 19, 22:04
    Sending you love and prayers.
  7. Cheryl Compton March 19, 22:53
    We are so very excited for your family and what this surgery will mean. Looking forward to all the great updates on how Alexis improves after the surgery. Will be sending TONS of prayers on Friday and following twitter for updates. Hugs from Michigan.
  8. Kristi Tylman March 20, 07:52
    Alexis, we love you!! My family and friends are praying for you honey!
  9. The Parsons Family March 20, 17:14
    To the Shapiro Family- Thinking of your family as your daughter Alexis undergoes her surgery tomorrow morning. Hoping this is the first step in what will be a new chapter for your entire family. We cannot even begin to imagine this horrible rollercoaster ride that all five of you have been on. Be strong! Many blessings sent from Las Cruces, NM from another military family. (USAF - retired)
  10. […] there are risks associated with the surgery, but we are confident that it is worth the risk,” mom Jenny Shapiro wrote in a blog post. “Everything we’ve tried has failed to control her weight. If we don’t do anything, her […]
  11. […] there are risks associated with the surgery, but we are confident that it is worth the risk,” mom Jenny Shapiro wrote in a blog post. “Everything we’ve tried has failed to control her weight. If we don’t do anything, her […]
  12. Terrie Coleman March 21, 08:50
    Keeping the family in prayer, you have a great Physician. Alexis will do well
  13. elizabeth March 21, 11:30
    I'm sorry for what your going through she's so beautiful. An you an your husband are so strong...I have a daughter with the same thing but she is four an she just had second brain surgery I'd love to talk to you on a different form thank you an I'll be praying.
  14. Cristi Eten March 21, 11:31
    I just read your story and realized that today is the Big Day! Please know that you have lots of people thinking of and praying for your family. Alexis seems like a wonderful little girl and is very lucky to have such incredible parents. May God bless you today and in the future.
  15. kay arwine March 21, 11:34
    I had this type of surgery back in 2003 and it saved my life.I thank god every day my Prayers are with u all to day if u need to talk just email me and I,ll be glad to share my thoughs. hugs and prayers to u all. a sister in Christ,
  16. Annie March 21, 11:37
    I read Alexis story in People magazine last week and was moved beyond words. Alexis and your family are in my prayers.
  17. Nathaniel Barasa March 21, 11:40
    Alexis, you are in our prayers. All will be well. We can't wait to see you up and about.
  18. jennifer Letskus March 21, 12:44
    I pray that everything goes well for Alexis, As well as her family
  19. Kim Baril March 21, 13:13
    Prayers for Alexis & her family from me & my family in Connecticut. We pray the surgery goes great and this young lady stays strong ?
  20. Michelle in KY March 21, 14:16
    Good luck Alexis. You are are a very strong young lady. Hugs, kisses, and prayers for you!!
  21. Jennifer March 21, 18:05
    I also just had the gastric sleeve surgery, it is not an easy thing but at times necessary. I will be praying for your precious daughter Alexis. May she recover from surgery quickly and adapt to this new life well. I also pray for you also the parents as I have been a parent with my child very sick in the hospital and that is not easy so I pray for your peace while you wait for her to wake, and to be comfortable. God Bless Jennifer
  22. […] there are risks associated with the surgery, but we are confident that it is worth the risk,” mom Jenny Shapiro wrote in a blog post. “Everything we’ve tried has failed to control her weight. If we don’t do anything, her […]
  23. […] a blog post published on Cincinnati Children’s Hospital’s website, Jenny wrote that her family […]
  24. Sharon March 22, 18:38
    Oh Alexis and Jenny and family- I think of you everyday and am following you on FB. Sending lots of love your way, as are many others. Your story has become part of our lives and we are with you as go through this. Love, peace, and strength to you all.
  25. Elle March 23, 12:29
    I'm sending your family my prayers. God bless and I pray for your little girl's recovery!
  26. M L SMITH March 25, 01:21
  27. Elaine March 25, 20:47
    Praying that the surgery went well and Alexis is recovering nicely. Our prayers continue for you and all of your family!
  28. Emma March 26, 18:24
    I've just learned of Alexis and her journey, which has brought back some painful memories of my childhood. I was diagnosed with a craniopharyngioma at the age of 5. I'm now 28. I too experienced immediate weight gain and excessive hunger, despite my parents' every attempt to keep my weight down and keep me healthy. I understand the gastric bypass wasn't completed, but I hope doctors will work with you (and insurance companies too) so that hopefully Alexis can curb the weight gain now. At 28, I've tried nearly ever commercial diet and often end up gaining weight rather than losing weight like I should. I hope all the best and I will keep following your journey Alexis.
  29. paula March 30, 17:35
    Dear Alexis... I wish you & your family all the best & pray that your surgery will help improve your health so you can enjoy everything life has to offer you. You are such a brave & beautiful girl that is loved by so many. Always remember you do have many friends that care about you. God Bless, Your friend, Paula
  30. Cathy March 30, 19:32
    I had RNY 8 yrs ago. On Facebook there is a 'Bariatric Surgery Support Group'. We are people of all ages that have had some type of WLS. Many people having the sleeve surgery with much success. Would like to recommend the group to you for encouraging support. My family and I are praying for your family. God Bless!
  31. Cade Larsen March 31, 22:32
    I also have Hypothalamic Obesity that I got from a Craniopharyngioma that was removed 2 years ago. I have had 7 surgeries since. I know it can be hard sometimes but you have to fight through it. You are an amazing girl and I know you have the strength to fight through this surgery. My thoughts and prayers are with you and your family.
  32. Carl Donovan April 10, 17:23
    MY son at the age of 8years old had his first surgery for craniopharyngioma his weight ballooned , energy levels floopped Until my wife just came across your story we were unaware of the use of bariatric surgery to help the weight gain .today another endocrine appointment and another Dr telling my son he must lose weight (we know) its been coming up to 15 years since this horrible disease struck him .He has not got a friend in the world, It robbed him of his childhood It kills me to see him alone only his mum and myself. Just wish there was someone there for him of his own age.his eyesight has been badly effected and not allowed to drive and not much chance of him fathering children , sorry for harbouring on, but at a loss sometimes and it was reading about Alexis I SEND YOU ALL OUR LOVE AND GOOD LUCK FOR THE FUTURE.X
  33. Steven Spacil April 22, 22:26
    Our daughter Savannah was diagnosed with a craniopharyngioma in 2003 when she was 5. It was affecting her vision, she had terrible headaches, balance problems, and she had gained some weight which was not unusual for her as she grew in spurts. After the surgery removed most of the tumor she developed hydrocephalus and has some memory and learning issues. She underwent many shunt revisions over the next few years, had some tumor regrowth (which was treated with radiation therapy) that shrunk the tumor and it has since stayed dormant. She has experienced the hunger problems that Alexis has, along with seizures, growth problems (one leg stopped growing and she had 2" of cadaver bone inserted to lengthen her leg), and now has problems with the old surgery wounds opening back up and not wanting to heal. She has had a total of 30 surgeries up til now and at age 16 she is the sweetest girl you will ever meet. We have had to keep our food under lock and key for nearly 10 years now and Savannah still sometimes manages to sneak and hide extra food. Through much trial and error my wife Cathleen has found an eating plan that works for Savannah and she can consistently lose weight until she manages to sneak some food and binge. Early on doctors told us that she would NEVER be able to lose weight but it can happen. Very difficult, but possible. Good luck to you all. Please feel free to contact us as we have dealt with this issue for quite a while now and feel that we can offer some helpful insights as well as a sympathetic ear. Steven, Cathleen, and Savannah Spacil South Weber, Utah
  34. Paula from NY June 02, 18:45
    Hi Jenny, I am so excited to hear about Alexis's progress she is doing so well! I heard about her weight gain on some talk show, my heart was breaking to hear of the pain and anguish you were all going through! I have praying for you all since I heard about Alexis. I hope that she continues to become healthier with every passing moment. Alexis and your family are an inspiration to all us who have children or grandchildren who are struggling with a childhood disease;you have displayed such courage. My thoughts and prayers will continue to be with you all. Paula
  35. Frances Gasparotto July 05, 02:12
    Hi Jenny, I am talking to you from Australia and your story has just about broken my heart. How brave you and your wonderful family are to come forward about this terrible condition. Alexis is still beautiful in my eyes and she will continue to get better and get her health back. We are all praying for you and from the Land of Oz - God Bless!
  36. Charlon settle July 10, 10:25
    Hey Alexis, I just heard your story on a repeat of the Doctors show. You are blessed to have the caring and loving parents you have. But, most of all, they are so very blessed to have such a special daughter like you. I am praying for God to hold your hands and lead y'all through this difficult time. Looking forward to seeing that big beautiful smile in your pretty face. Don't ever forget you are loved by so many people.
  37. emily eskra June 13, 22:00
    Alexis I hope you enjoyed the care package I sent the doll just reminded me of how beautiful you really are. I hope your sister and brother liked their ty animals. Its always nice to see the accomplishments when you have perfect strangers supporting you.
  38. William Stanley August 27, 08:18
    Really it is a great article and more helpful to know more about Gastric Bypass surgery. I will pray for Alexis.Thanks for sharing a nice blog.