What is an organ transplant?
transplantation or an organ transplant. Transplantation is done when a person’s organ has been damaged or stops working. This is usually caused by illness or by an injury, but also can be caused at birth by a medical condition or birth defect.
The need for an organ transplant is especially difficult for children. Finding organ donors can be very emotional and stressful for all family members. There is also the added risk of developing unrelated health problems following transplant surgery. And a child who needs an organ is often seriously ill or in a life-threatening condition before the organ is transplanted.
What are some different kinds of organ transplants?
The most common organs for transplant are:
- Kidney/pancreas (can be transplanted simultaneously).
- Heart/lung (can be transplanted simultaneously).
What can I do to help my child?
You have made an important first step by reading more information on organ transplants. You also can talk with other parents of children who have had an organ transplant. They have gone through what you are going through now and may be able to help. You also can get great help from parent support and advocacy groups. Research tells us that the earlier we begin to help children, the better the results for the child and family.
THINGS I CAN DO TO HELP MY CHILD WITH AN ORGAN TRANSPLANT
IN THE STATE OF FLORIDA:
Contact Children’s Medical Services (CMS)
for medical care for your child
Children’s Medical Services
Main Phone: (850) 245-4200
Get my child evaluated:
Evaluate your child’s capacity to learn (intelligence) as well as function in such important areas as memory, attention, visual-motor skill and language development. This evaluation is best done by a neuropsychologist or psychologist experienced in working with children with special medical problems. The psychologist also can test your child for school placement or grade level.
Children with serious medical conditions often lag behind other children in developing skills. If your child has been affected by serious illness or the organ transplant, he or she can get extra help catching up.
If your child is between ages birth to 3 years old, he or she can be evaluated by a team of experts through the Early Steps program for free. Your child may be eligible for free services.
For more information or to make a referral to Early Steps, please call (800) 218-0001
or visit the contact list : http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/earlysteps.pdf
If your child is 3-5 years old, contact Child Find/Florida Diagnostic and Learning Resources System (FDLRS)
for help with evaluations and assessments. FDLRS also can tell you about special-education programs in the public schools.
Florida’s FDLRS Child Find
Florida Department of Education
Work with my child’s service providers:
A service provider is anyone who works with you and your child, such as a pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. Remember you know more about your child than anyone else and are the main influence in your child’s life. Service providers are there to help you and your child. Here are some tips for speaking with service providers:
- Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular (such as an evaluation of ability to learn), keep asking until you get it or until you learn why it is not needed.
Work with professionals in early intervention or in your school to write your child’s IFSP or IEP reflecting your child’s needs and abilities. Be sure it includes such services as speech-language pathology, physical therapy, and occupational therapy if your child needs these.
Get more information:
Visit more websites. Read a book. Watch a video on organ transplant. Include your child and family. Talk with another parent. Help Me Grow can help you meet other parents and get services.
I will have my child wear a Medic Alert bracelet:
In case of an emergency, important information on your child’s condition must be available.
Listen to my child often:
Encourage your child to talk about feelings. Listen when your child is talking. Acknowledge those feelings as real. Many children understandably will fear an organ transplant and can feel anxiety or depression after. Discuss your child’s feelings and really listen.
Give my child the chance to talk with a trusted adult:
Sometimes children need to talk about things they do not want to share with their parents. They may think the subject will upset you or scare you. They may think you will think they are being silly. Your child may be having problems dealing with things after the organ transplant. A therapist or psychologist often can make a child comfortable enough to talk about those subjects. Children may need another trusted adult to help them deal with feelings.
Protect my child from the sun:
Anti-rejection medicines sometimes cause children to be sensitive to the sun. Protect your child. Sunscreen, hats and shirts should be used when in the sun.
Teach my child good hand-washing techniques:
One way to help keep children healthy is teaching them to keep hands germ free. Germs cause infections. Teach your child how to wash their hands with soap and water. Teach your child to wash after going to the bathroom, before eating and any time hands touch something dirty or he or she is around germs. Practice hand washing. Do it right so your child will model you. Teach everyone in your family and teach them why.
Won’t have my child to handle pet waste:
Infections are dangerous for your child after an organ transplant. Because pet cages and litter boxes have a lot of germs, don’t ask your child to help clean them. Your child can have a pet and be around pets, but be sure your child washes his or her hands well and often.
Talk with my child’s teacher:
Talk with your child’s teacher often and make sure she knows about your child’s condition. Ask for help. Your child’s teacher and school can help keep your child caught up in school.
Learn more about hospital/homebound services:
Public schools by law must provide teachers who will come to your child in the hospital or at home when your child is out of school for a long time because of health reasons. Hospital/homebound services may include therapists and therapy in your home or in the hospital. Learn how your child may qualify. Help Me Grow or other advocacy groups can help if you need.
Make a plan for my child to go back to school:
Work with teachers, counselors and social workers on a plan for returning your child to school. (For younger children who may be entering the school for the first time, it is also important to work with the school.) Coming back to school after a long illness will scare some children. Your child may need to make friends all over again. Help your child’s classmates understand about the organ transplant by asking the teacher to explain it. Or, better yet, if your child wants to this, ask the teacher to allow your child to tell the class.
Prepare my child for questions other children will ask:
You and your child’s teacher can suggest simple answers to questions children will ask. Help your child by practicing. Pretend you are a classmate and ask the questions.
For a baby, I can learn how to do infant massage:
This is a powerful way to connect with your baby and a soothing activity for both of you. It also shows your baby that life can feel good and not always be uncomfortable, painful or “medical.”
Include my child in all parts of daily life:
Encourage your child to take part in family fun, recreation activities and play that can be done safely. Laughing, running, chattering are all fun and good. Talk with children all day long about what you are doing even before they learn to talk.
Plan a play time every day for me and my child:
Try to spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but makes both of you feel better. For ideas on how to play with your young child, go to www.Parenthood.com
Make music a part of my child’s life:
Music is a great way to share time together and brings pleasure. Try it in the car. There are many children’s tapes to which everyone can sing together. Your child can learn words at the same time. Music can be soothing and healing. Classical music is thought to stimulate brain development.
Do many children have organ transplants?
At any given moment more than 80,000 children and adults await an organ transplant. Children’s Organ Transplant Association. Many children who would have died just a few years ago because their organs quit working can live full lives today.
Children’s Hospital www.childrenshospital.org
What does an organ transplant mean for the health of my child?
Many things, including which organ was transplanted and the age of the child, affect how a child does after an organ transplant. The child’s medical condition also makes a difference as to how well children do after the transplant. Most children recover fully and can go to school and lead full and active lives.
Children seem to have more complications and more rejections than adults. Infections and rejection are your child’s biggest dangers. When the body “rejects” the new organ, the child’s body can’t function normally. Learning about monitoring and giving your child anti-rejection medicine is vital. Helping your child avoid germs and sick people diminish the rate and severity of infections. There is also a risk of developing health problems after the transplant that are not directly related to the new organ. Be aware of these health concerns:
- Anxiety and depression.
- Gastrointestinal upset.
- High cholesterol.
Anxiety and Depression: Children and their families face a new life after an organ transplant – a new life that can bring uneasiness, fear and depression. Some children worry about self-image and lose self-confidence. Some have mood swings. Some have trouble getting along with their friends. Professionals can help you and your child work through problems. In addition, many children become anxious about germs. Seek help if you notice your child overly anxious or depressed.
Diabetes: Anti-rejection medicines are given to a child to help bodies not “reject”‘ a new organ. Some anti-rejection medicines cause high blood sugar. Diabetes is a condition caused by high levels of sugar in the blood but is usually a condition that doesn’t last very long. It is more common in patients who have family members with diabetes as well as in overweight patients. Doctors can give less of the anti-rejection medicine or change the medicine taken by a child.
GI upset: GI stands for “gastrointestinal” referring to the stomach and intestines. A GI upset is a common complaint after a transplant. Children on anti-rejection medicine more likely develop ulcers. Ulcers are like sores inside the stomach or intestines, and are caused by increased stomach acid. Doctors usually will give a child with GI upset medicines to help the body make less acid.
High cholesterol: When a child has high cholesterol, blood vessels become clogged. Even those of the transplanted organ can become clogged. If blood vessels are clogged, blood cannot flow easily, and this slower flow can affect the new organ. Blood brings oxygen and nutrients to the new organ. Without those, an organ cannot remain healthy. Many anti-rejection medicines can contribute to high cholesterol and, hence, affect many children with organ transplants. High cholesterol also can lead to heart disease.
Hypertension: Hypertension, sometimes called high blood pressure, is common immediately after an organ transplant. Certain anti-rejection medications, as well as the original disease, can contribute to hypertension. Your child’s doctor may give your child medicine to treat hypertension. As the amount of anti-rejection medicines are lowered to a maintenance dose, the hypertension often lowers, too. A maintenance dose of medicine is the lowest dose of the anti-rejection medicine that will keep the body from rejecting the organ. It is given to keep the child healthy and eliminate health conditions.
United Network for Organ Sharing
What does an organ transplant mean for my child’s intelligence and learning?
If your child has just had an organ transplant, the last few months have probably been scary for you and for your child — and no doubt very tiring for the whole family. But, things are probably better now. As your child gets better, you likely will see a big improvement. Many children with transplants go on to live active and full lives. But there will be much for you and your family to do and learn. Your child will have doctor’s appointments often, and you will need to be watchful for side effects from anti-rejection medicines.
Most children with an organ transplant do not have changes in their intelligence (ability to reason or think) or ability to learn. But some very young children or children with certain types of implants may be slower to learn. This has to do with the time children were sick and didn’t grow or develop like other children.
Moreover, some medications your child takes after an organ transplant can make it more difficult to focus, pay attention or concentrate. It also can affect fine-motor skills (ability to control small muscles such as the fingers when used to write). This can make it seem as though there is a learning problem.
If you notice such difficulties, talk with your doctor. Most often, children have great improvements physically and start to feel much better. Learning skills usually get better, too, and schoolwork improves. So does the ability to get along with and play with other children.
For a while, after the organ transplant, your child will more easily get an infection, a “bug” or the flu. Some parents lower this risk by keeping their child at home and away from other children until they are stronger. Some parents choose to have their child home schooled. Whatever you choose, keep your child away from anyone who is sick.
Who are some professionals my child may need to see?
Your child may need to see many different health care specialists. For example:
Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works with children.
Pediatric surgeon: A doctor who specializes in operating on children.
Pediatric transplant team: A group of doctors, nurses and other medical professionals who specialize in doing organ transplants on children. They also care for these children after the transplant takes place.
Pediatric psychiatrist: A doctor who specializes in the diagnosis and the treatment of problems involving thinking, feeling and/or behavior in children and their families.
Pediatric psychologist: A professional who tests your child’s ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child’s ability to learn has been affected by a long-term illness or organ transplant. The psychologist also can test your child for school and grade placement. An evaluation is painless and usually doesn’t take that long.
Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.
Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help get services and assistance.
What are some websites where I can learn how to help my child?
United Network for Organ Sharing http://www.unos.org/ Helpful website offering resources that can be downloaded, including a 10-page brochure entitled, “Organ Transplants: What Every Kid Needs to Know.” Click on Transplant Living in the upper right-hand of the screen for information on living with a transplanted organ.
NIH MedlinePlus: http://www.nlm.nih.gov/medlineplus/organtransplantation.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.
Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.
Children’s Organ Transplant Association http://www.cota.org The Children’s Organ Transplant Association provides fund-raising assistance for children and young adults needing life-saving transplants and promotes organ, marrow and tissue donation.
Donate Life http://www.organdonor.gov/ Provides information on organ donating and links to state and local organ-donation websites and resources.
What are some special books I can read with my child?
To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder by Chris Klug and Steve Jackson. The book tells a story of an athlete who needed an organ transplant. It is told from the perspective of both the donor family and the recipient. (Young adult and up)
Now Caitlin Can: A Donated Organ Helps a Child Get Well by Ramona Wood. Based on a true story, this book is about a child named Caitlin and told from the perspective of her brother Freddie. (Ages 4-8)