Choosing a Transplant Center

Your child's doctor has told you that a liver transplant will soon be necessary for your child. For a smooth transition from pre-transplant to post-operation, many things need to be considered. First and most importantly, you need to decide if the geographical location of a center affects your decision in any way. Will you be able to leave family, home, and/or work to reach your transplant center? Will you need to relocate? Just because a center is far away, doesn't mean it is better than centers in your area. If, at all possible, it is best to go to a center nearby. By using a local center, your other family members can share responsibilities, you can see your other children and you can take a break from the hospital. Another very important issue is medical insurance coverage. Does your insurance plan allow you to choose your transplant center or are they in contract with a specific center? How much of the costs will be covered (80% or all)? Are there any restrictions? If you are a member of an HMO (health maintenance organization), you will need to know which centers your HMO is contracted with. This may decrease your possibilities, but do not worry. Most major HMOs have agreements with many of the finest hospitals. You may also be aided by the expertise of a benefits administrator because of the complexity of a transplant (surgery, medications, nursing, aftercare, etc.). It is very important to read over and discuss your benefits with your administrator. Some HMOs will pay for many out-of-pocket expenses such as airfare, lodging, food, etc. If you have major medical insurance or state-aid, you will need to check with the provider to find out what they will and won't pay for. Is there a lifetime policy limit (i.e. $1,000,000)? Find out everything you can. It is better to research beforehand rather than at a time of extreme emotional stress. If your insurance will not pay all of the expenses, how will you obtain enough money?--Loans from other relatives, friends, banks, or credit unions, fundraising? Keep all your options open.

Who will care for your other children when you are with your hospitalized child? Is there anyone (i.e. grandparents or friends) who can help? Can you get the time off work? If not, can you survive without your income? It is wise to decide which center to use before your child's health has deteriorated and a transplant is urgent. If your child is currently in a hospital that performs transplants and you are confident in the staff (surgeon, GI doctors and nurses), you may not need to look any further.

It is a good idea to obtain the UNOS (United Network of Organ Sharing) Center-Specific Pediatric Liver Transplant List. You can obtain the rating of ten transplant centers at no charge. Write to UNOS, Attention: UNOS Data Request at 1100 Boulder Pkwy., Suite 500, P.O. Box 13770, Richmond, VA 23225 or fax UNOS at (804) 323-3794. When writing, please include your name, address, daytime telephone number, type of transplant (i.e., pediatric liver) along with your list of up to ten transplant centers. If you have questions, please contact UNOS at (800) 24-DONOR or (804) 330-8500. There are many wonderful centers, although not every center is right for every family. Use the statistics to rule-out places that are below standard, but don't put too much of an emphasis on statistics. A center that does 20 transplants a year can be devastated by bad luck even though it may be an excellent center. Each patient loss will decrease their statistics by 5%. If they had a bad year and lost 6 patients, their success rate would be 70%. This could make an excellent center look poor. Sometimes a large center will have lower success rates because they perform more high risk transplants. This does not mean it is not a good center, but just that they are receiving patients who are sometimes sicker at time of transplant.

Next, you need to speak with different centers to see how their transplant program works. Here are some questions we recommend that you ask. Be sure to go with your own list of questions.

• How long should your child expect to wait for a donor?
• How many pediatric liver transplants do they do each year?
• What are their patient and graft survival rates?
• How long is the average hospitalization after a transplant?
• Who is the surgeon?
• What is the surgeon's personal experience?
• How many years has the surgeon performed pediatric liver transplants?
• How many pediatric liver transplants has the surgeon done to date?

Make sure you and your family are confident in your transplant team. It will be very important if and when complications arise.

Choosing the right transplant center is a very difficult decision. If you would like to speak to a parent who have had their child transplanted at a specific transplant center, let us know. Good luck!

Happy Birthday

Brooke Dennis-1, Maeve McMahon -1, Sheroya Wilkens-2, Bridgett Wilson-2, Bobby Webb-4, Zachary Bryon-5, Elizabeth Jarnot-5, Kayla Wallace-5 & Jill Leslie-20 September

Ambria Bilotta-1, Nicholas Clemmer-1, Joshua Dietrick-1, Michelle Portra-1, Colton Sinning-1, Alexandra Biess-2, Ahron Shain-2, Heather Fraser-3, Michael Seidl-4, Kara Durfee-5, Amanda Moore-6 & Nailyn Rodriguez-6

Happy Anniversary

Angela Lopez-2, Gus Goffard-3, Bryanna Lackey-3, Sarah Graham-4, Courtney Williams-5 & Chelsea Lautenschleger-6 September Transplants

Tyler Archer-1, Gamhal Giraldovallejo-1, Valerie McGhee-1, Chelsea Zay-1, Brady Cole-4, Jill Nolan (2nd)-6, Lacey Maus-6, Tara Christensen-7 & Vinnie Pagano-7

Immunization: What Does It Mean For Your Child After Transplant?

When your child is immunized, he or she is exposed to a weakened or dead virus/disease, which causes his body to produce the same antibodies that would develop had he or she contracted the disease itself. Should the virus attack his or her body in the future, these antibodies will recognize the virus and destroy it. A Scottish physician, Edward Jenner, first alerted the medical community to this amazing phenomenon. His immunization theory made medical history in 1796 when he infected a healthy 8 year old boy with cowpox, a less serious form of the disease, smallpox. Within a week, the boy developed a slight fever, and a couple of small scabs on his arm. Shortly thereafter, the boy was exposed to smallpox and remained healthy. Because of the exposure to cowpox, he developed immunity to smallpox.

Immunizations save the lives of thousands of children each day. Although most children respond with little or no reaction after receiving a vaccination, there are some children who do become ill or develop fevers. Some have more serious reactions, but it is rare to have a severe reaction. Knowing this, keep in mind that the benefit of receiving the vaccination greatly outweighs the risk of contracting the disease.

How do vaccinations affect your transplanted child? They are as important to your transplanted child as they are to any other child and should be administered as close as possible to the time schedule outlined below. However, if your child is hospitalized or too ill to receive any of the required vaccinations at the appropriate times, they may be given at different intervals. Most importantly, after transplantation your child should only receive dead viruses (most viruses are live). Be sure to check with your GI doctor and/or transplant coordinator before making any decisions.

What are these shots and what do they mean for your child?

TD - This vaccine is a DTP booster shot given after age 7 without the P (Pertussis) portion. At this age, Pertussis is less likely to occur and is less of a risk if contracted, compared to a younger infant. This booster is also given with a reduced dose of the Diphtheria vaccine.

OPV or TOPV - Polio vaccine. Children usually receive a total of 4 doses of this vaccine before they start school. Reactions to this vaccination are very rare. NOTE: For a child whose immune system is compromised (i.e., transplant recipients), an injectable, inactivated (dead) virus called IPV (also known as the Salk vaccine) is necessary. NOTE: Siblings and other household members of transplant recipients must also receive this dead virus, and NOT the live polio virus.

MMR - Measles, Mumps, Rubella. Common reactions to this vaccine, which usually occur a week or two after injection, include rashes, slight fevers lasting for a few days, swelling of the neck glands, and aching or swelling of the joints. Much less common reactions include tingling, numbness, and pain in the hands and feet and allergic reactions. Very rare reactions include convulsions with fever, inflammation of the brain, deafness, and/or nerve damage. NOTE: Transplant centers differ on how and when this vaccine should be administered, if, at all. It should be given cautiously to a child after a transplant. Please check with your transplant coordinator before administering this vaccine.

Hib - Hemophilus b. It is geared to prevent the deadly hemophilus influenza b bacteria which cause a variety of very serious infections in infants and young children (i.e., meningitis, epiglottis-an infection which obstructs the airways). Although this vaccine has little or no side effects, some very rare effects include fever, redness and/or swelling at the injection site, diarrhea, vomiting, and crying.

HPV - Hepatitis B vaccine. This vaccine is fairly new (it was recommended in 1992). Hepatitis B is a serious liver disease which causes liver cancer later in life. Children who have not been vaccinated earlier should also be immunized despite their age. This vaccine has shown no serious side effects.

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Chelsea Zay

Organ Recovery: The Procurement Process

The recovery of organs is a crucial part of a successful transplant. The OPO (organ procurement organization) Coordinator must first obtain consent from the family. Before an organ is considered for transplantation, doctors must examine several factors. First, they must pronounce the potential donor brain dead. This is the result of the patient having suffered irreversible brain damage (loss of all brain function). Brain death can be due to head trauma, usually from an automobile accident, fall from height, drowning, suffocation, aneurysm, stroke, shooting or cardiac arrest. However, patients with brain tumors are sometimes suitable donors. The donor must satisfy specific criteria as required by the USPHS (United States Public Health Services government agency) such as testing negative for the AIDS viruses and Hepatitis. Donors are also disqualified when cancer or active infections (i.e., pneumonia) are present. Sometimes the surgeon will turn down an organ because of low blood pressure, high blood pressure, poor organ function or pre-existing medical conditions (i.e., diabetes). A liver may also be refused if it is bruised, if a patient shows early-stage liver disease, has blood pressure so low that the liver is not being perfused well, or because of old age. Yet, a donor with a damaged liver may make a suitable kidney donor and vice versa. Once the donor passes this stage, they then offer the organs for transplantation.

Once they have established the patient as a donor, an OPO Coordinator or other medical personnel must keep the donor well-hydrated and maintain proper circulation before and during the actual recovery of the organs. It seems like a contradiction of terms as the donor has died, yet the donor's organs are being kept perfused and oxygenated to assure that they do not jeopardize the organs.

The OPO Coordinator arranges for the placement of the organs. Transplant teams from different transplant centers arrive at the hospital of the donor. Although general surgeons at the donating hospital who have special training in transplantation may remove the liver and kidneys. There is one team for each organ being offered for transplantation. Naturally, the more organs recovered from a donor, the more complicated and time-consuming the process of procurement becomes. They recover the heart and lungs first. Next, they remove the liver and pancreas. The kidneys are the last organs to be recovered. Finally, they take corneas and tissue. Organ recovery is done in this order because the heart and lungs are the most sensitive to ischemia (blood flow deprivation) and the kidneys are the most resilient. The donor's surgery is done with the utmost respect allowing for a funeral with an open casket. If the eyes or bones are donated, surgeons insert prosthetics to preserve the appearance of the donor.

In obtaining the liver, the hepatic artery must quickly be located and isolated, so if the donor "crashes," the surgeon can recover the liver. The blood flow is then separated to sustain blood flow to the other organs that need to be extracted from the donor for possible use in the recipient (the portal vein, the vena cava, above and below the liver, and the bile duct). They then thread a large plastic tube into the portal vein. Chilled "Viaspan (of DuPont)," is then fed into the tube (also known as "UW solution" and "Belzer's solution.") Once the liver is removed, it is secured to an IV pole and continues receiving an infusion of UW solution while being placed in an ice cooler. Now the organ is ready to travel with the surgeon and the team back to the waiting recipient. Time is of essence, as a liver generally should not be without blood flow for more than twelve hours. Even thought, at times, the liver can survive up to twenty-four hours.

The recovery of organs from a donor is always a delicate and intricate procedure. The surgeons assert the same skill during the recovery procedure as they do to the actual transplantation of the organs. Quality care of the organs destined for recipients remains a priority, as this maximizes the best possible outcome for a successful organ transplant.

Angels Above Us Bereavement Support

Brooke Dennis

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Last modified: 11 May 2000 ">