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The Call and

Transplant for Pediatrics

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Section 1: The Call

What are the benefits of talking to your child about their transplant?

Children coming to the hospital usually have many questions and concerns, even if they do not know how to express them. Many parents want to protect their children by not telling them things that could be scary. Your child is more afraid when he or she does not know what is happening. Before your child comes to the hospital, give them as much honest information about their condition as you think they can understand. Benefits of talking to your child about his or her transplant include:

  • It can build trust in your child and hospital staff.
  • Your child will know what to expect.
  • Honest information corrects false ideas about transplants.
  • It can help your child cooperate during treatment.
  • It can help give your child get a sense of control.
  • Your child can learn how to get through hard situations.
Encourage your child to trust the medical staff. It is important that children believe that we are all on the same team. It may be hard to tell your child about transplant as children often know when something is wrong. Think about your child’s age when you are choosing words to explain the transplant. If your child is very anxious, or you need help explaining the transplant in appropriate terms, you may wish to speak to a psychologist, child life specialist, or social worker. Your transplant team wants your family to be successful, so don’t be afraid to ask them for help or a referral to someone who might be able to provide extra support to your family. You also need to educate and prepare yourself, so you are not anxious, as children will reflect these feelings.

Tips for Talking to Your Child about Transplant

  • Tell your child what their incision (opening for surgery) or scar will look like.
  • If your child is especially anxious, consider drawing a picture of an incision on a doll or on their abdomen.
  • Find books to read about going to the hospital, your child's medical condition, or other related topics. Reading together and discussing the book will help to relieve anxiety. You can be on the look-out for "Elpis the Elephant Get's an Intestinal Transplant" which will be coming out in the near future.
  • Tell your child they will have some pain, but they can ask for medicine to make them feel better. A child is often anxious about surgery because of their fear of pain.
  • Inform your child that a special doctor will give them medicine which will put them in a very deep sleep so they will not feel anything during the operation, once the operation is complete, they will wake up.
  • Tell them the doctors and nurses are there to help make them feel better and are on their side.
  • Check with your child to make sure they understand what will happen. Ask them to explain in their own words what they think will happen or what could happen.
  • Explain the problem. Explain at your child's level of understanding. As you explain, avoid harsh phrases such as "cut into you," or "staple you together," rather, explain the doctor is going to fix the problem by giving you new parts and using gentler language.
  • Children learn from doing, seeing, and hearing things many times. You may need to explain the transplant multiple times for them to fully understand. Do not get frustrated by repeated questions or confusion.
  • Check to see if your transplant center offers a tour of the hospital for kids. Often times this will be offered through child life services and is helpful to familiarize your child with the hospital and help to reduce anxiety.
  • Make sure to tell your child that a transplant is no one’s fault. Many children believe that a transplant is caused by something they did, said, or thought and feel it is their punishment for "being bad."
Reference from Preparing Your Child For Surgery by Nemours KidsHealth. Find more helpful information here.

What happens when my child receives the call for transplant?

When an organ becomes available and suitable for your child, you will receive a phone call. Timing is essential, and your child's coordinator will tell you when you need to be at the transplant center. After arriving at the hospital, your team will admit your child. The preoperative testing consists of a chest X-ray, EKG, comprehensive lab work, and any other testing your child's particular transplant center may require. When appropriate, your team will transport your child to the operating room. The support staff will direct you and your family to a waiting area and provide periodic updates while waiting for your child's surgery to be completed.

Section 2: The Transplant

What should I expect for my child's actual transplant?

The actual length of the transplant surgery can vary based on the type of transplant your child is receiving and the extent of abdominal pathology that your child has. The surgery can range from 8-16 hours. Throughout the transplant, the transplant team will give you updates on how your child is doing.

What should I expect during the initial recovery phase of my child's intestinal transplant?

After the surgery, your child will go to the Pediatric Intensive Care Unit (PICU).

  • Your child will remain intubated (tube in his or her throat to help them breathe) until it is safe to remove and they are able to breath on their own.
  • Your child will also have drains coming from his or her abdomen which help to drain any excess fluid that may accumulate from the transplant surgery. These will remain in your child until the transplant team feels they are safe to remove, generally 2-3 weeks post-transplant.
  • You should also be aware that your child will have a nasogastric tube (NG) to help decompress and drain the stomach, a urinary catheter to drain urine, as well as many intravenous (IV) lines to help provide fluids and antibiotics to your child in the recovery phase.
  • As your child recovers and moves through the post-transplant phase, more of these lines and tubes will be removed and your child will start to feel more ‘normal’ again.

What is an ileostomy and why might my child receive one during an intestinal transplant?

An ileostomy may be present after surgery, depending on your transplant center and its protocols. If there is an ostomy present, this is what may expect:

  • This is a surgically created opening in the last segment of bowel (the ileum) through which waste passes.
  • The ileostomy is essential for monitoring the health of the transplanted bowel and will regularly be biopsied to check for rejection.
  • Biopsies will occur 1-2 times per week initially after transplant.
  • During the procedure, an endoscope is inserted into the stoma and advanced 4-8 inches.
  • The physician visually can observe the transplanted bowel.
  • A small pen point biopsy, piece of tissue, is taken from the transplanted bowel and analyzed under a microscope to determine if changes indicating rejection are present.The first biopsy takes place 5-10 days after the transplant surgery.
Biopsies will be repeated a few times a week while your child is in the hospital after transplant, and then frequency will decrease as times goes on. Please note: Each transplant center varies. Not every center creates an ostomy after transplant. Each center also has different protocols for the frequency of biopsies. Please refer to your child's transplant team for their specific protocols.

How might my child react emotionally to his or her recovery and the hospital stay?

Every child is different, but... The hospital stay can be very upsetting for children.

  • Their daily routine and sleep patterns change.
  • They will also face strange and sometimes painful tests and meet many new people.
  • It is normal for them to be irritable and bad-tempered after this experience, especially if their stay in the hospital has been a long one.
Try to keep to familiar routine as much as possible during your child’s recovery. Bedtime routines are especially important for good sleep. Be sure to bring your child’s favorite blanket or toy that they use to fall asleep.

What should I expect for my child's discharge planning and education?

Before your child's transplant team discharges them from the hospital, your transplant team will provide you many hours of education on medication administration, organ transplant infection, and rejection. The transplant coordinator and nursing staff will help you create a schedule and system to meet your child's individualized needs. After your child leaves the hospital, he/she will still be recovering. For the first four to six months, there will be some restrictions on daily activities. During the recovery period, the transplant team will closely follow your child's progress. The team will monitor your child on a long-term basis. You must agree to be available for blood work, examinations, abdominal scans, frequent endoscopic tests, and follow-up appointments in the transplant clinic. As time after transplant passes, follow-up visits tend to be less frequent unless complications develop. In this case, your child's plan of care will be dependent on their medical condition.

Section 3: Additional Resources

Helpful Downloads from Transplant Unwrapped

Sign-Up or Log-In to Access: 1. Preparing Your Child for Surgery: Useful tips on preparing your child for surgery. 2. Hospital Diets: A brief overview of different types of diets your child may encounter in the hospital.

Helpful Article: Feeding Disorders

How to approach feeding difficulties in young children. By: Dr. Hye Ran Yang Some children have feeding difficulties after intestinal transplant. This article reviews different types of feeding disorders in young children.

Helpful Website: Kennedy Krieger Institute Feeding Disorders

Kennedy Krieger Institute Feeding Disorders: Helpful explanation of feeding disorders in young children.

Transplant Unwrapped: Learn From Others

Learn From Others: Read stories, watch interviews, and listen to audio from numerous members of the intestinal community on a variety of topics. Useful for This Section: Learn from Others- Clinician Interviews- Part Two: Intestinal Transplant Surgery Presented by Dr. Kishore Iyer

Transplant Unwrapped: Support Programs

Support Programs: Visit the Transplant Unwrapped Support Programs page to get your questions answered, speak with others in similar situations, and feel well-supported during your medical journey.

Page References

References here.