Important Facts About Infant Organ Donation

Health. The most important thing we want for our children is good health. Sure, maybe deep down inside, at one point or another while you were expecting, you had a gender preference but, ultimately, at the top of everyone’s list is health. 

There’s no greater fear inside a parent’s heart and mind than the one that involves their child becoming sick, or suffering a serious injury. You don’t realize just how overpowering the love and sense of protection you can feel is until an extension of yourself is living and breathing outside of your body.

Sometimes, things happen, though. Sometimes, as much as we try, we can’t control life. For one reason or another, whether it’s poor luck, or fate, or some power from the universe we cannot comprehend, a child becomes sick. Really sick. Uproot life, baby in a hospital bed, mom and dad take residence at a hotel or Ronald McDonald house for months kind of sick. And that baby needs a heart, or a lung, or a kidney to survive.

Even worse, sometimes, because of some completely horrible and unforeseen circumstance, children are taken from their families far too soon. Parents aren’t supposed to plan funerals for their babies and sadly, it happens.

Both situations are awful, horrifying and make you sick-to-your-stomach. It’s hard to even begin to fathom that good could come from either of them. But, what about when if their paths cross? Is that even possible?

If a child’s organs are donated, in the event of a tragic and untimely death, that child could actually save someone else’s life. That child’s heart, lungs, kidneys, and more, can serve as gifts of life – potentially saving as many as eight lives.

Here, we have provided eight questions you may have about organ donation.

1  Should Your Child Be a Donor

It is extremely difficult to think of how the death of a child could possibly bring anything positive to the world, especially when you think of the possibility of that child being your own. We aren’t here to put negative ideas in your mind about the life of your child but, rather, to consider options for the potential of if.

There are more than 120,000 people in the United States alone who currently are in need of an organ transplant. That number continues to grow, too; someone is added to the waiting list for an organ every 10 minutes. The sad, unfortunate side to this is that thousands of people die each year waiting for their perfect match.

Transplant recipients are essentially given a second chance at life the day that they receive their transplant. In fact, most recipients and their families consider the day they receive their transplant to be like a second birthday; it is their chance at a new, healthy life.

Take a moment to consider how it must feel to be a parent of a child who is waiting for a life-saving transplant. Knowing there is nothing you can do to fix your baby, you are forced to sit and wait for fate to take over, and for the day you get “the call” that a match has finally been found. Thoughts you would never imagine thinking could run through your mind.

  • Wishing for a match to come through
  • Feeling guilty for wishing death upon another innocent life
  • Considering what life will be like if you don’t receive your match in time, and lose your child

In that situation, one is forced to feel gratitude toward the families who, in a time of extreme grief, have been able to do something so tremendous to help save the lives of other people. A completely selfless act of love and kindness, they made the conscious decision to, in a way, have their child/family member live on through someone else. Some of those parents eventually get to meet the person who is living thanks to your child and, that experience must, simply be, incredible. 

2. What Can Be Donated

When you hear the word “transplant”, you probably automatically think of a major organ, like a heart or lung, necessary to keep someone alive. On the contrary, though, there are a number of other things that can be transplanted from one human to another, and from a living donor, too.

Of course, organs can be donated, and those that can be transplanted include:

  • - Heart
  • - Kidneys (if only one, can come from a living donor)
  • - Lungs (if only a part, can come from living donor)
  • - Liver (if only a part, can come from living donor)
  • - Pancreas (if only a part, can come from living donor)
  • - Intestines (if only a part, can come from living donor)

Other items include tissue, such as corneas, the middle ear, skin, heart valves, bone, veins, cartilage, tendons and ligaments. These can be used to give someone their sight, cover burns, repair hearts, replace veins and fix damaged connective tissue and cartilage in recipients. If you have chosen to have your child be a donor, you can decide which organs to include or exclude, if you wish.

In addition, stem cells, including marrow, peripheral blood stem cells and cord blood stem cells can be donated, and from a living donor. These transplants are most often done to replace bone marrow that stopped working or has been damaged by a disease (leukemia, aplastic anemia, inherited blood diseases and diseases of the immune system), chemotherapy or radiation. 

While typically, these donors are adults, children have been known to donate bone marrow to someone in their family – likely a sibling. Acquiring someone’s bone marrow is a surgical procedure, in which doctors use needles to remove liquid marrow from both sides of the back of the pelvic bone. The hospital stay is usually only from early morning through afternoon, occasionally overnight for observation.

Blood and platelets can also be donated, but there are requirements for donors, which children do not meet. For one, you need to weigh at least 110 lbs., and in the United States, you need to be at least 17 years old.

So, it is important to note that while most transplants are taken from those who have died, many other transplants can be done from living donors

3. Child Donor

In order to register to be an organ donor, you need to be at least 18 years old. If you are under 18, you need parent or guardian consent to actually register as a donor.

In most instances where a child is an organ donor, the child has suffered a traumatic injury. While the healthcare professionals work to do everything within their power to save him or her, he or she will be placed on life support. If the medical team has done everything possible, and the patient does not respond, the patient will be tested for brain death. These tests are performed on multiple occasions, by a neurosurgeon or a neurologist, and determine if:

  • - There is any ability to breathe without a ventilator
  • - The patient can respond at all to stimuli
  • - There is any blood flow to the brain

A patient is considered brain dead when there is absolutely no brain activity, and he or she cannot breathe on his or her own. It is important to know that this is not the same as a coma; brain death is considered death, and is not reversible.

If a patient has died, or is near death, the hospital will alert its local organ procurement organization (OPO) to let them know about the deceased and about his or her potential to be a donor. If the patient is a prospective candidate, a representative from the OPO will travel to the hospital. 

In the cases of the possible donor being an adult, the OPO will check to see if he or she is a registered donor, which will serve as legal consent. Otherwise, if the possible donor is a child, the OPO will speak with the child’s parents/guardians about the option to donate the child’s organs. These individuals make every effort to be sensitive to the parents, knowing they are going through a horrible experience in losing their child.

If the parents agree to donate their child’s organs, the child will have a full medical evaluation, and the parents will provide complete medical/social history. From there, the Organ Procurement and Transplantation Network begins to search for matching recipients. 

A list of patients who match the donor will be generated, and each organ is offered to the first patient on the list who is a match. During this time, the donor is maintained on life support, while each organ is monitored carefully by the hospital medical staff. 

4. The Transplant Process

Children in need of transplants most often have a congenital abnormality, meaning this condition was present at birth. This abnormality then leads to abnormal development of their organ function. You will not find a child who needs an organ transplant due to high blood pressure or diabetes leading to kidney failure. These are mainly reasons for adult transplants.

While we talked above about children being donors, it is not crucial for a child to receive another child’s organ. It is definitely ideal for a smaller patient to receive a smaller organ, but in the instance of a liver transplant, an adult liver can be cut down to size for a pediatric patient and, amazingly, it regenerates and will grow back to its original size in roughly six weeks!

The processes vary from case to case, as the situation will not be the same with each child who needs a transplant. In the end, though, if he or she is deemed suitable for a transplant, they will be placed on the waiting list for that specific organ (or even organs). The amount of time one will be on the waiting list also varies, as it all depends on the patient’s size, blood type and waiting status.

  • - For a heart, a patient will typically wait weeks to months, and it is not uncommon to wait more than a year.
  • - For a liver, the wait time is typically about eight months (urgent cases can possibly receive a transplant within a few days or weeks of listing).
  • - For a kidney and intestine transplant, the wait time is typically more than a year.

A match is determined by the organ procurement organization after running a test within their system (UNet) to match information from their donor to prospective recipients. The system will generate a ranked list of suitable patients for each organ. 

Ranking is affected by tissue match, blood type, length of time on the waiting list, immune status, geographic location and degree of medical urgency. The organ will be offered to the transplant team of the first person on the list. If the team agrees that the donor and recipient are a match, surgery is scheduled. The surgery itself can take anywhere from four to 12 hours, depending on the situation

5. Meeting the Organ Recipients

We briefly mentioned this before, but we are going to dive a little deeper into this subject now.

It can be a truly healing experience to finally meet the person, or people, who is/are alive thanks to your child. Unfortunately, sometimes this is not possible because the donor or recipient and their family may choose not to have contact for any particular reason. 

Or, depending on your country, you may not be allowed to have direct contact with the donor or recipient at any time. In other cases, you may need to wait a specific amount of time before you are allowed to do so.

Confidentiality policies sometimes prevent patients and donors/the donor families from meeting. Initially, quite often, donors and patients are allowed to have anonymous contact within the first year after the transplant.

  • - They can send cards, letters and gifts without revealing who they are.
  • - After time, the donors and patients might want to directly contact each other and, if they both consent, their personal contact information will be shared.

Living organ and tissue recipients are proof that transplantation works. News articles occasionally cover stories about transplant recipients and their families meeting the donor, or the family of a donor. 

Recently, the New York Daily News included an article about a mother who met a woman who received her son’s heart after he was accidentally shot and killed by a friend at the age of 14. The woman was 13 years old when she received her heart transplant, which she needed due to a heart muscle disease. She is now 31 and, thanks to the internet and social media, managed to find her donor’s family on Facebook and arranged the meeting herself.

There is a video of the meeting included with the article. During the video, you see the mother hold a stethoscope to the woman’s chest and listen. Within seconds, she is smiling. She heard her son’s heart beating within the woman’s chest, the same heart she would have heard when her son was young, as she hugged him and tucked him into bed. What a surreal feeling that must have been for her. 

6. Does Religion Matter

We understand that religion is very important to some of you. For this reason, we will say that presenting this information is not to show one being right or wrong, but to simply show factual information for your knowledge.

Putting others before yourself and doing acts of kindness and love are promoted by most, if not all religions. For this reason, organ donation and transplantation is widely accepted by nearly every religious affiliation. Even with those affiliations that do not have a specific stance on the matter, meaning they do not oppose nor promote organ donation, the decision to donate one’s organs after death is considered a personal choice.

While most mainstream religions, such as Christianity, Judaism, Islam, Buddhism and Hinduism, throughout the world are accepting of organ transplantation, there are a few who do not support it. Those include:

  • - Shintoism
  • - Christian Scientists
  • - Jehovah’s Witnesses

In Japan, organ transplantation is relatively rare, as Shinto traditions state that once a person is dead, the body is impure. In addition, traditional views state that defiling a corpse will bring bad luck to the person who does it, and removing organs falls into the category of “defiling”. With that, many, if not most Shintos oppose taking organs from those who have just died.

While Christian Scientists do not ban modern medicine per se, their belief is, instead, that healing should be achieved through meditation and prayer. Overall, they prefer avoiding professional medicine when possible. As a result, many Christian Scientists will not donate their organs or participate in transplantation, because they think that their illnesses should be healed through their faith.

Jehovah’s Witnesses are the one prominent American faith that prohibits transplantation. Members of this faith view an Old Testament prohibition against the “eating” of blood as meaning that blood from one person shouldn’t enter another’s body, even through a medical needle. 

Because there is blood in the organ itself, this blood-transfer ban therefore means that Jehovah’s Witnesses cannot donate or receive organs unless there is a “bloodless transplantation,” meaning all blood is washed from the new organ and no transfusion is needed (this is extremely rare). 

7. Does Nationality Matter

First and foremost, organs are not matched according to race/ethnicity, and people of different races can, and frequently do match one another. 

However, because compatible blood types and tissue markers (critical qualities for donor/recipient matching) are more often found among members of the same ethnicity, individuals waiting for an organ transplant will have a better chance of receiving one if there are large numbers of donors from their racial/ethnic background.

  • - Currently, in the United States, African Americans represent 30 percent of all individuals waiting for an organ transplant, making them the largest group of minorities in need of an organ. A possible cause of this is that there are higher rates of diabetes and high blood pressure present among African Americans than among Caucasians. This increases the risk of organ failure. Thirty-four percent of those on the waiting list are in need of a kidney, and 25 percent of those waiting are in need of a heart.
  • - Asian, Native Hawaiian and other Pacific Islanders suffer significantly from kidney and liver disease, and Asians are 5.5 times more likely than Caucasians to develop hepatitis B. Native Hawaiians and other Pacific Islanders are seven times more likely to develop chronic liver disease and twice as likely to develop diabetes, which increases the risk of organ failure. Ninety percent of Asians, Native Americans and other Pacific Islanders on the U.S. transplant list are waiting for a kidney.
  • - Hispanics/Latinosin the United States have high rates of diabetes and heart disease. In particular, Mexican Americans suffer from diabetes, hypertension and heart disease, which increases the risk of organ failure. There are more than 22,000 Hispanics/Latinos currently waiting for an organ transplant in the United States. Hispanics/Latinos make up 19.5 percent of those waiting for a kidney and 17 percent of those waiting for a liver.

The International Registry in Organ Donation and Transplantation is a database that provides information, by country, of donation and transplantation activity. In its most recent report, from 2013 (it is still gathering details from 2014), readers can find a specific, detailed breakdown of how many organ donors and transplants were done throughout 71 countries. 

8. Available Resources to Recipients/Donors

The experience of going through the loss of a child or family member, as well as the process of dealing with a child who is gravely ill, awaiting a live-saving organ transplant, can weigh extremely heavily on the hearts and minds of the child’s parents and relatives.

Dealing with the death of a child takes time and is sometimes the kind of emotional wound that never truly heals. To handle this, there are often many counseling services offered by the hospital, or even in your community that can help you to grieve and find ways to carry on in life. As we mentioned before, another way to find some closure may be to meet an organ recipient, though, that may not be an option everyone wants to consider.

Of course, there are plenty of resources available to children and families of children who are in need of a transplant, too. From learning how to explain the situation to your child, to understanding how his or her life will change going forward, there are a lot of things that are important to know and, luckily, a lot of places to find helpful ways of handling it all.

  • - The United Network for Organ Sharing has a great book that is meant for kids to read before their transplant to help them understand what their body is going through, and what to expect afterwards.
  • - Life after a transplant involves medications and taking extra precautions to prevent your child from becoming ill, as their immune system will not be as strong as it was before (certain medications taken to reduce the risk of his or her body rejecting the transplant will cause this).
  • - As kids get older, they may be interested in attending summer camp. Luckily, there are camps available to children who are specifically enduring a chronic/life-threatening illness or have undergone a transplant.

For parents, it’s important for you to stay open and honest with your child if he or she is old enough to understand what is going on. Even though it is hard, try to remain optimistic, as children take cues from adults. If you need an outlet, find a supportive friend or group to join where you can voice your fears comfortably. 

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