1. Hirschsprung’s Disease
& the Make-A-Wish Foundation
Amanda Metricarti
Period 9
Rieger
http://www.wish.org/var/wish_user/storage/original/image/e8d70669a91b9456b72432fe262c204b.jpg
2. Thesis Statement
The Make-A-Wish Foundation sponsors children with
life-threatening conditions by granting wishes, to
enrich the human experience with hope, strength and
joy.
http://ncwishball.org/images/dreams_homepage.png
3. Why this topic?
“We make a living
by what we get, but
we make a life by
what we give.”
~Winston Churchill
http://img.docstoccdn.com/thumb/orig/49146955.png
http://www.quotegarden.com/helping.html
5. Hirschsprung’s Disease (HD)
*What is it?
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/Digestive_Boy.jpg
6. What are the large intestine, colon,
rectum, and anus?
Large intestine
colon
rectum (connects)
anus
http://www.consumerreports.org/health/resources/images/conditions/colon_default.jpg
7. Why does HD cause
constipation?
Short-segment HD
Healthy Long-segment HD
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/L_Intestine_Nerve_Cell1.jpg
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/L_Intestine_Nerve_Cell2.jpg
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/L_Intestine_Nerve_Cell3.jpg
8. What causes HD?
Before birth
cells grow in
direction of anus
With HD
cells stop growing
soon
http://nursingcrib.com/wp-content/uploads/hirschsprung-disease1.jpg
9. What are the symptoms?
Constipation
Intestinal
Obstruction
hdawarenessribbon.jpg
10. Symptoms in Newborns
Vomiting
Swelling of abdomen
Gas
Bloody diarrhea
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/FemaleDoctor_Baby.jpg
11. Symptoms in Toddlers and
Older Children
Not being able to “go”
Slow growth
Lack of energy
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/tiredgirl.jpg
15. Biopsy
A small, slender core of tissue is
removed with a biopsy needle and
looked at under the microscope.
http://findmeacure.com/wp-content/uploads/2008/12/liver-biopsy41.gif
16. Treatment
The Pull-through
Procedure
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/L_Intestine_Procedure2.jpg
17. After the Pull-through
Procedure
May have diarrhea for awhile
After awhile they will go less
Must learn to use muscle
Most learn to have better bowel control
19. Post- Ostomy Surgery
They will feel better
Learn to change
May feel
uncomfortable
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/images/OstomyNurse_Boy.jpg
20. Diet and Nutrition
Fluids
Infants need feeding tubes
through nose or incision
in abdomen
High-fiber foods
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/index.htm
22. Facts
• The cause of HD is unclear. HD is not caused by anything a
mother did while pregnant.
• If a family has a child with Hirschsprung's disease, there is a 3 to
12 percent chance that another baby they have will also have the
disease.
• Hirschsprung's disease occurs in 1 out of every 5,000 live births.
• Hirschsprung's disease causes 25 percent of intestinal
obstructions that occur in newborns.
25. Make-A-Wish
The Make-Wish Foundation not only
grants life wishes of children with life-
threatening diseases, like cancer, but
also other serious diseases that might
not take a child’s life.
http://t3.gstatic.com/images?q=tbn:ANd9GcSsi0K6iaG19TskBAbY6ypcNDbYhN6uy7UAdZMbh0yJMZ6JuuSN&t=1
29. “A wish experience is frequently a source of
inspiration for children undergoing
difficult medical treatments and a positive
force that helps them overcome their
obstacles.”
~Make-A-Wish Founders
http://www.wish.org/about/how_we_grant_wishes
30. Step 1: Referral
Step 2: Medical eligibility
Step 3: Finding the true wish
Step 4: Creating joy
http://farm6.static.flickr.com/5054/5499862096_e25fac1d1c_m.jpg
31. 1 I wish to go
Some wish kids want to travel to their favorite theme park, while others
want to visit an exotic beach, go on a cruise, see snow for the first time, or
attend a major sporting event or concert.
2 I wish to be
Children search the depths of their imagination when they wish to be
someone for a day – a firefighter, a police officer or a model.
3 I wish to meet
Many want to meet their favorite athlete, recording artist, television
personality, movie star, politician or public figure.
4 I wish to have
Children often wish for a special gift, like a computer, a tree house, a
shopping spree or something that they have coveted for a long time.
tumblr_lgpraxRJnf1qbbj38o1_500.jpg
32. • at least 2½ years and under 18
• children diagnosed with life-threatening
diseases such as progressive, degenerative
or malignant conditions that place a child’s
life in jeopardy
I have done my SGP on Hirschsprung’s Disease and the Make-A-Wish Foundation..\n
(Just read it)\n
My whole life my family has been taking in foster kids up until this year and it has really set an impact on my life and made me realize that just maybe it’s not so bad helping others who are in need. And then I came across this topic and thought that it would be really great to get involved with this foundation. I never really knew what the Make-A-Wish Foundation was about until I started researching it and it turned out to be really life-changing and inspirational, so I decided that I would get far with this topic. The picture on the left says, “welcome to the land of Make-A-Wish. where a child’s joyful dream becomes a reality. and a heartfelt wish really does come true!” and then the quote on the right, “we make a living by what we get, but we make a life by what we give.” i just thought that what my family has been doing my whole life and how it made a great impact on a few great people and i like to think that we “made their life” by giving them a family. \n
You all have papers on your desk with true or false questions and I’m just going to go through them before we actually go over the disease and just yell out whatever answer you think it is... \n
To start off in basic terms, Hirschsprung’s Disease is a disease in the large intestine that causes severe constipation. \n\n
The large intestines includes the colon and rectum; they make up the last part of the digestive tract. Now, to break things down a little, the large intestines main job in the body is to absorb water and hold stool, then the rectum connects the colon to the anus, in which the stool passes out of the body through. And a little fun fact is: when you’re first born, your large intestines is about 2 feet long but normal adult’s intestines are usually about 5 feet long. \n
With this disease, your large intestine lacks cells either in part of it or in all of it and that is what causes constipation. This causes constipation because the nerves inside the large intestine signal the muscles and tell them to push the stool towards the anus, so without the nerves there to give the muscles a signal, the stool will just sit there inside the large intestine. And the amount of cells someone lacks determines how much of their large intestine is affected. The pictures on the slide are of the different severities of it. The first picture shows what a healthy colon looks like, with nerve cells all throughout the intestine. The picture in the middle is ‘Short-segment HD’ which means that it’s only the last part of the large intestine that is lacking cells. And the last picture shows ‘long-segment HD’ which is where there’s a few cells but it’s missing basically all the nerve cells in the large intestine and sometimes part of the small intestine. Now, in a person who has Hirschprung’s Disease, their stool moves through their large intestine until it reaches the part that is lacking cells and when it gets there, it moves really slow and sometimes even stops, which will cause intestinal obstruction. \n
Before birth, a child’s nerve cells grow along the intestines typically in the direction of the anus, but with HD, the nerve cells stop growing too son before that. It is unclear why the cells stop growing, but this disease is inherited, meaning it’s passed from parent to child through genes but cannot be caused by anything a mother does while pregnant. \n\n
some of the main symptoms of HD include: constipation and intestinal obstruction, which usually appears shortly after birth. For infants and children, constipation is mostly common and it comes and goes. \n
Some specific symptoms for newborn babies are: \n-them failing with having their first bowel movement\n-having green or brown vomit\n-explosive diarrhea after the doctor inserts a finger into the rectum, which can also result in bloody diarrhea \n- the swelling of their stomach, or abdomen\n-And lots of gas\n
Some symptoms of toddlers and older children include symptoms from the newborn and also: \n\n-them not being able to “poop” without taking some kind of laxatives or enemas, which is a procedure where a liquid or gas is injected into the rectum to get rid of everything inside\n\n-having bloody diarrhea \n\n-having slow growth or development with their bodies\n\n-and lacking energy because of a shortage of red blood cells, which is called anemia \n
HD is normally diagnosed based on symptoms and test results.\nWhat would happen is, a doctor would perform a physical exam on the patient and then ask their parents questions about their child’s bowel movements. If HD is suspected, the doctor will do a few more tests. The different kinds of tests they do on patients are x-rays, a manometry, or a biopsy.\n\n
Now, Everyone obviously knows what an x-ray is, it’s an electromagnetic radiation of high energy that is able to pass through many materials that you can’t normally see with light OR in simpler terms, it’s a black-and-white picture of the inside of the body.\nTo make the large intestine more visible for the doctor in the x-ray, the doctor will fill the patient with something called barium liquid, which gets inserted into the anus for the large intestine.\nWhen you go to the doctor and they believe that HD is the problem, it’s possibly because the last segment of your large intestine will look narrower than normal. Just before this narrow segment, the intestine will look bulged and the bulging is caused by blocked stool that stretches the intestine. \n\n
This is another one of the ways they diagnose Hirschsprung’s Disease; this is called Manometry. This test is normally just done on teenagers and adults. During this test, the doctor inflates a small balloon inside the rectum. If all is normal, the rectal muscles will relax but, if the muscles don’t relax, HD may be the problem. \n\n
And the last test is called a biposy. This test is usually the most accurate test when testing someone for Hirschsprung’s Disease. When you have a biopsy done, the doctor removes a tiny piece of the large intestine, but in this picture it shows the liver instead, and they look at it with a microscope. When they look at it, if nerve cells are missing, Hirschsprung’s Disease is definitely the problem. \n
There are two different kinds of treatments for this disease and one of them is the pull-through procedure. This procedure is normally done right after someone is diagnosed. For this procedure, they remove the diseased segment that has no nerve cells and attach a healthy segment to that same part of the remaining rectum. \n
Most children pass stool normally after the pull-through procedure. Children may have diarrhea for awhile, and infants and toddlers may develop diaper rash, which is treatable with diaper creams. Over time, stool will become more solid and the child will go to the bathroom less often. Toilet training may take longer. Children often must learn how to use the muscles of the anus after surgery. Some children may leak stool for awhile, but most will learn to have better bowel control as they get older.\n\n
An ostomy allows stool to leave the body through an opening in the abdomen. Although most children with HD do not need an ostomy, a child who has been very sick from HD may need an ostomy to get better before the pull-through procedure.\nFor ostomy surgery, the surgeon first takes out the diseased segment of the large intestine. The end of the healthy intestine is moved to an opening in the abdomen where a stoma is created. A stoma is created by rolling the intestine’s end back on itself, like a shirt cuff, and stitching it to the abdominal wall. An ostomy pouch is attached to the stoma and worn outside the body to collect stool. The pouch will need to be emptied several times each day.\n
Infants will feel better after ostomy surgery because they will be able to easily pass gas and stool.\nOlder children will feel better, too, but they must adjust to living with an ostomy. They will need to learn how to take care of the stoma and how to change the ostomy pouch. With a few changes, children with ostomies can lead normal lives. However, they may worry about being different from their friends. A special nurse called an ostomy nurse can answer questions and show how to care for an ostomy.\n\n
After the pull-through procedure, children with long-segment HD need to drink more fluids. Now that the large intestine is shorter, or entirely gone, it is less able to absorb fluids the body needs. Drinking more helps make up for the loss. \nSome infants may need tube feedings for awhile. A feeding tube allows infant formula or milk to be pumped directly into the stomach or small intestine. The feeding tube is passed through the nose or through an incision in the abdomen.\nEating high-fiber foods can help reduce constipation and diarrhea. Fiber helps form stool, making bowel movements easier. High-fiber foods include whole-grain breads, vegetables, and fruits. Some children may need laxatives to treat ongoing constipation. Consult a doctor before giving a laxative to your child.\n\n\n
People with HD can suffer from an infection of the intestines, called enterocolitis, before or after surgery. Symptoms include: fever, swollen abdomen, vomiting, diarrhea, bleeding from the rectum, and lack of energy. \n\n
These are just a few facts about Hirschsprung’s Disease that I haven’t really mentioned yet... The cause of it is unclear and it is not caused by anything a mother did while pregnant. If a family has a child with the disease, there’s a 3-12% chance that another baby will be born with it. It occurs in 1 out of every 5,000 births, and it causes 25% of intestinal obstructions that occur in newborns. \n\n\n
Now we’re going to go over the answers to the true and false questions and see how many you got right... \n
I’m sure you’re all probably wondering where I got the idea of this disease from, and now I’m going to tell you. So, when I started this project, it all originated around The-Make-A-Wish Foundation. When I started with the foundation, they gave me a wish child and her name is Raven. She was born with Hirschsprung’s Disease, that’s where the disease came from. The Make-A-Wish Foundation is an amazing foundation and I’m going to tell you all about it. \n
(read the slide) The Make-A-Wish Foundation is a world-wide foundation that helps out families with diseased or sick children. They grant one of the children’s wishes which helps out the mood of the family going through hard times because it adds joy to their child’s life. \n
Now, The Make-A-Wish Foundation goes back to the year 1980 and was started with a 7 year old boy named, Chris. At the time, Chris was being treated with Leukemia and everyday he dreamed of becoming a police officer. \n
What happened was... A U.S. Customs Officer had befriended Chris and his mom and decided to take on Chris’ wish and make it happen, before it was too late. The officer had promised that he would take Chris on a ride in a police helicopter. But when Chris started to get really sick, the officer contacted a Public Safety Officer from Arizona and together they planned a day to surprise Chris and lift his mood a little bit. Then on April 29, of that year the officer brought Chris on a tour of the whole city in a department helicopter and that flew them to headquarters and they made Chris his very own, personal uniform. They gave Chris the uniform on May 1st and then on May 2nd, Chris was brought back to the hospital. The next day Chris passed away happy, knowing his wish came true. \n
After seeing how happy all of this made Chris they thought, why not do this for other children too?! The two men on both sides are two Arizona officers that attended Chris’ funeral and the woman is Chris’ mother, Linda. These three people proposed the wish to the others to help Chris’ wish happen and that was it. The Chris Greicius Make-A-Wish Memorial; that later became known as the Make-A-Wish Foundation, was created. \n
I chose this quote because it basically sums up how the whole granting wishes process really works and what it does for the children. \n
Step 1: Referral\nWe rely on medical professionals, parents and children themselves for referrals. Children who have reached the age of 2½ and are under the age of 18 at the time of referral who have not received a wish from another wish-granting organization may be eligible for a wish.\n\nStep 2: Medical eligibility\nWe determine a child’s medical eligibility with the help of the treating physician. To receive a wish, the child must be diagnosed with a life-threatening medical condition – i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy.\n\nStep 3: Finding the true wish\nWe send one of our enthusiastic wish teams to learn the child’s one true wish. These passionate volunteers connect with wish children and help explore their imaginations for the experience that will delight and inspire them.\n\nStep 4: Creating joy\nOur wish granters create an unforgettable experience driven by the child’s creativity. It’s an incredible experience that enriches not just the lives of the children and their families, but often an entire community.\n\n
What can a child wish for?\nMost wish requests fall into four major categories; I wish to be, I wish to go, I wish to have,and I wish to meet.\n
The mission of the Make-A-Wish Foundation® is to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. Children who have reached the age of 2½ and are under the age of 18 must be referred to the Foundation and determined to be medically eligible for a wish by their physician. The child's treating physician makes the final determination of whether a child's medical condition qualifies him or her for a wish.\n\nNo. Many of the children who qualify for a wish go on to lead healthy lives. We grant the wishes of medically eligible children (i.e. those diagnosed with life-threatening medical conditions - i.e., a progressive, degenerative or malignant condition that has placed the child's life in jeopardy.)\n\n\n
Like I said on the previous slide, Raven is four years old and was diagnosed with Hirschsprung’s Disease as a baby. She’s been doing really good for a while, until recently she’s been in the hospital because she’s so sick, so unfortunately I was never actually able to meet her and her parents. She’s gone through almost everything that I’ve talked about, dealing with the disease. But even though she’s dealing with this terrible sickness, she is still a normal little girl. Her favorite colors are blue and pink, she plays with dolls, she loves Hannah Montana and Dora, and she also enjoys watching basketball. \n
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This is my works cited for all my research. The first three websites helped me the most with my project because they had almost everything I needed for my research on Hirschsprung’s Disease and the Make-A-Wish Foundation. \n
