In 2002, my husband Steven, youngest daughter Savannah, and I were involved in an automobile accident. We totaled our van. Savannah hit her head and received a big hematoma on her forehead. We went to the hospital. They X-rayed her and said she was fine. I had some neck and back damage and Steven hurt his hand. They were all minor injuries. They sent us home to recover.
Over the next few months, Savannah kept getting headaches. We were told they were probably just a result from the accident. Her headaches kept getting worse, so her pediatrician scheduled her for an MRI. It was scheduled out 3 weeks in advance at Primary Children’s Medical Center in Salt Lake City. On Friday, May 2, I got a call from the hospital and they had a cancellation for Saturday morning, May 3 and asked if I could bring her then. I was actually relieved, because I thought “good, Steven will be off of work and he can go with us”.
So, we went to the appointment. While she was having the MRI (without contrast), the machine slowed down really slow. As soon as it was over, they pulled her out and told us that they needed to do another scan WITH contrast. Savannah was VERY upset because she did not like needles at all. This is where Steven and I started to get a little concerned. They did one more scan. The next thing I remember were 2 or 3 doctors standing in front of us telling us that Savannah had a brain tumor. Steven asked one of the doctors, Dr. Marion Walker, what do we do? His response: “We go in there and get it out!”
Seven days later, on May 10, 2003, Savannah underwent a nine-hour surgery to resect the tumor, a Craniopharyngioma, a benign tumor that destroys everything in its path. It was sitting on her pituitary gland and growing up into her hypothalamus. Dr. Walker said that Hydrocephalus had already set in and that if she had gone two more weeks she wouldn’t have made it.
Because the tumor was sitting on her pituitary gland and destroyed it, she has hypopitutiarism and Diabetes Insipidus. It was also growing up inside her hypothalamus and destroyed the part of her brain that controls hunger and appetite. Because of this damage, Savannah has what is termed, Hypothalamic Obesity.
The area of the hypothalamus that was affected releases hormones, which control the function of the pituitary gland immediately below it, also controlling energy balance. Because this area has been damaged, Savannah is always hungry and no matter how little she eats, she either gains weight or has a very hard time maintaining her weight. According to experts this form of weight gain is not responsive to diet and exercise. Victims of this form of obesity continue to gain weight despite their best efforts, and suffer greatly. We were told that she would never lose weight.
Savannah began drug treatment (Octreotide) for this disorder on 8/14/03 and in the beginning we saw improvement in her condition. Before the drug was given she was waking up hungry several times a night and was having 3 meals and 2 snacks a day with a sugar free dessert in the evening. On a good controlled day, she was down to 3 small healthy meals and 1 snack a day with an occasional sugar free dessert. Because calories count in Savannah’s situation, she was given very low fat and sugar free foods.
After Savannah had radiation therapy in late 2004, her hunger became worse than normal. In January of 2005, Savannah got into the refrigerator early in the morning before anyone was awake and had 23 pieces of processed cheese. Being concerned about what this might do to her we called her pediatrician and explained what happened. He told us to give her lots of water to help bring her sodium level back down (processed cheese has lots of sodium). The next day she had a grand mal seizure that kept her in the hospital for a week and took her back to being a 3 year old mentally. The doctor’s told us that she would never return to public school and that we just needed to get used to a new life. We didn’t accept that and she was back with her regular class 20 days later. At this time, she received an aide to assist her at school. At that time we placed a baby monitor in her room so we could always hear her and also had to lock up all the food in the house. If anything were left out, because she is in starvation mode, she would eat it.
It was also at this time that we were informed that she couldn’t drink straight water, as it brings her sodium level down, and this is what had caused the grand mal seizure. We started to give her Gatorade to drink but this caused her to gain weight because of the added calories. Steven, the smart man that he is, did some research and found that if we added 1.5 oz of Dirty Martini Mix to 2.5 Gallons of Crystal Lite, it gives her the right amount of sodium to keep her sodium levels where they need to be for her Diabetes Insipidus. I know this sounds crazy, but the DDAVP that they had prescribed to help with her sodium wasn’t working and this actually worked.
In late March 2007, Savannah’s Endocrinologist took her off of Octreotide because she felt like it was no longer working. We felt the same way until two weeks after she had been off the injection. We were all wrong. She began eating things that we had been able to leave out for the past four years – things that you or I would never think of – drinking maple syrup, mixing salt and water to drink, trying to open up canned food with scissors, eating spices, getting into cabinets when no one was looking and hiding the food until everyone went to bed, then gorging herself (ex: whole jar of peanut butter). Another time we had an 8-pound roast in the crock pot to cook overnight, and when we got up all that was left was enough to make a fairly decent roast beef sandwich. It has been a real battle. One night we had some Lime away on the counter and she asked us to put it up before we went to bed. We told her it was poisonous and she would probably die if she ate it. She said she knew that but she said that when she’s really hungry in the middle of the night she doesn’t know what she will eat and she didn’t want to die! Our kitchen now looks like a fortress!
To date, Savannah has had 34 surgeries. The first one was the original surgery where she had the tumor resected. She had a hernia surgery, her tonsils and adenoids removed, 3 leg surgeries because the tibia in her left leg stopped growing due to the brain tumor and another leg surgery where she spent 3 months in a rehab hospital recovering and most recently one on both legs to stop the growth in her legs because since her 3 month stay she has grown 3 inches and the legs are becoming uneven again. She’s had 2 plastic surgeries to help heal open wounds from leg surgeries and abdominal surgery where they thought there was a perforation in her bowels but once they got in there could never find the perforation and then the remainder of the surgeries were ventricular shunt revisions for her hydrocephalus because the shunts have failed.
Still, the greatest challenge we have is that of the hunger. Savannah is 19 years old now and she has become more skillful at finding ways to get food. When she was in 8th grade she figured out that money equals food. We had to hide all of our money, because she would take it to school and find ways to use it to get food. We would check her bags and coat every morning and she still occasionally got to school with money. It took the school several weeks to realize that they needed to have someone with her constantly or she would find ways to get to food. Once they figured it out, she had someone with her constantly, every minute she was there, up until she graduated.
Sneaking food has been survival for Savannah. Occasionally we will leave the pantry or the refrigerator unlocked and she will get food out and hide it. She knows it’s wrong, but to her it’s survival. It’s not that she doesn’t understand consequences, they just don’t mean anything to her. In her eyes she’s starving and she’s just trying to survive.
Doctors have told us that the average patient who has Hypothalamic Obesity gains an average of 20 pounds a month. She was in a study that was being conducted shortly after she was diagnosed. Six months into the study, the study was discontinued. We asked why it had been discontinued and their response was, “She’s the only surviving patient.”
While she was in the rehab hospital the summer of 2010, there was an awesome dietician that worked with us to reduce Savannah’s weight. She was 5’ 7” and weighed 308 pounds. While she was in the hospital, we put her on a 1500-calorie diet, and a few weeks into the stay dropped it to 1200 calories a day. She lost 95 pounds. After she came home she lost an additional 10 pounds making it a total of 105 pounds. It took an additional 5 months to lose the additional 10 pounds. Savannah is now almost 5′ 10″ and has gained a lot of the weight back and weighs 270 pounds.
In March, 2016 like I said above, she had an emergency surgery where they thought there was a perforation in her bowels. They never found the perforation but did put her on an antibiotic to ward off any infection and it gave her c. diff. What a horrible illness! She got very sick and had c. diff for 2 months. She was only able to eat very little and around that time I changed her diet.
A friend of mine, Chris Humpherys, developed a program called Eat and Be Lean, and I decided that I was going to put both her and I on this program because Chris told me that she believed that Savannah was truly starving! In the first 2 weeks I had her on the program, she told me she wasn’t hungry (she was eating 2,000 calories a day), and she lost 7 pounds. She then got sick again and had to go to the hospital with unexplained pneumatosis for another week and had to go without eating so we’re getting back to the program and we’ll see how things go in the coming weeks. I think things look promising!
Although Savannah has these struggles, she is still a very loving, kind, and mostly naïve little girl. On the other hand, because of these struggles, she lives very close to the Veil. She has a spiritual light in her that people see and feel and are drawn to. One media personality that met her called her “an old soul”.
Another problem that was caused by the tumor was a Cognitive Developmental Delay. She is just a little slower than other kids her age. Like I said, she is 19 years old, and she still has a baby doll, Sally, that she sleeps with every night. And she believes she is real. Well, not really, but if you hold her the wrong way, or put the covers over her wrong, Savannah lets you know! Savannah believes in the Tooth Fairy, Santa Claus, and the Easter Bunny. But I do too!
Savannah is very creative! To keep her mind occupied, because of her hunger, she creates art. Just recently, I created a website to showcase all of her artwork. You can go here. to see the beautiful work she has created.
She brings joy to us and I thank my Heavenly Father for her every day I have her with me! She is a true blessing in my life!
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