I really can’t think of a scarier thing for a doctor to say then, “Your child needs a transplant or she will die.”
And yet, that was my reality, and it might be yours, if you’re reading this. I was nineteen years old when my doctors first broached the subject of a double-lung transplant with me. I have cystic fibrosis (CF), a genetic disease that makes my body's mucus too sticky, because there’s too much salt in my body. That makes the mucus hard to clear, and leads to lung infections, loss of lung function, and eventually, lung failure. It also affects the digestive system of the body by clogging the pancreatic ducts, inhibiting the release of digestive enzymes, and possibly insulin. So people with CF can need double-lung (we have to have both lungs transplanted), kidney, or liver transplants.
At nineteen, I was focused on college, not my possible demise. And yet, without my transplant, I wouldn’t have made it to my twenty-fourth birthday. I was lucky enough to receive my new lungs on July 11, 2005, and I’ll celebrate my sixteenth transplant anniversary this year. But not everyone is that lucky. There is another person added to the national transplant waiting list (for all organs) every 10 minutes in the United States. Twenty people die daily waiting for a new organ, and more than one hundred thousand people are currently on the list in the US. That’s 100,000 families that are affected by organ donation.
If you’ve heard that your child needs an organ, your mind is probably swimming with questions, and if you’re Catholic, one of those questions is probably, “What does the Church say about organ donation?” Well, I’ll tell you!
The first thing is to realize that there are two types of transplants: living donor transplants and “cadaver” (aka, from dead people) transplants. Some transplants like bone marrow, liver, kidney, and parts of a lung, can be done with living donors. However, others, like hearts and a double lung transplants, can only be taken from deceased donors.
In both cases, all major religions regard transplantation as an act of charity. For Catholicism specifically, Pope St. John Paul II wrote in Evangelium Vitae that:
“A particularly praiseworthy example of such gestures is the donation of organs, performed in an ethically acceptable manner, with a view to offering a chance of health and even of life itself to the sick who sometimes have no other hope.” (86)
Let’s note the “ethically acceptable manner” part. What this means, roughly, is that organs are not coerced from someone. They have to be given as a free gift. Also, people cannot be killed for their organs, because this is not ethically acceptable!
In the United States, we have what’s called an “opt-in” system. That means that if you want to donate your organs or tissues, you have to tell someone and become part of the United Network for Organ Sharing (UNOS) database. (Some countries have an “opt-out” system, meaning that you are an organ donor unless you tell the state that you don’t want to be.) You can get a symbol on your driver’s license that says you’re an organ donor, or you can enroll at donatelife.net. You can even sign up via the Health app on an iPhone! But it’s also best to tell your family your decision, so that they know. If you have questions about donation, check out this FAQ.
Now, I knew all this before my transplant. Heck, at the time Pope Benedict XVI was even an organ donor! I thought that I was in the clear as far as the ethics of transplant were concerned. But after my transplant I noticed that some Catholics feel that organ donation is not acceptable, because they do not believe in brain death (also called neurological criteria) as a cause of death. However, Pope St. John Paul II spoke on this as well, in 2000:
“The use of neurological criteria for the determination of death can be legitimate according to the Catholic Church. In an address he gave to the [18th International Conference of Organ Transplant Specialists] in August 2000, Pope Saint John Paul II observed that their application, if rigorous, “does not seem to conflict with the essential elements of a sound anthropology.” He further stated that “a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgement which moral teaching describes as ‘moral certainty.’ This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action.” Neurological criteria consist of three basic signs: deep coma or unarousable unresponsiveness, absence of cerebral and brain stem reflexes, and apnea. Pope Pius XII and Pope John Paul II both said the Church has no competency in determining death; this properly belongs to medical science." Source - Taken from The National Catholic Bioethics Center [NCBC] website.
I don’t want to get too far into the weeds here, but brain death criteria is rigorous. One of the problems people run into when we talk about things like brain death is that the media (and medical TV shows) do a really crappy job talking about this. They mix up brain death, vegetative states, and comas all the time. So it makes learning about, and talking about, end of death bioethics really hard!
The key thing to remember here is that the organs must be taken ethically: meaning the person is not coerced, or killed for their organs. Being an organ donor doesn’t mean that you get lesser care at a hospital. Doctors and nurses aren’t prowling around looking for people to kill to take their organs.
The NCBC also says that:
“A faithful Catholic may receive organs from a donor who is declared dead by neurological criteria. A faithful Catholic may also make provisions for the donation of his own organs in the event of his death whether it is determined by cardio-pulmonary or neurological criteria. Reasonable doubts about the rigor with which the determination of death would be made, however, may warrant caution.” (site)
I highly recommend reading the entire NCBC page because it answers all of these points in-depth, so you can decide how much information you want, including how the media portrays these issues.
Another question I tend to get when I talk to people who do not support organ donation is that “oh, I support it because I got a donation.” Well…..No.
I don’t believe in prolonging my life by means that are not Church-approved. If the Church said organ donation was unacceptable, I’d be sad (to put it mildly), but I’d also know that I was acting according to the Magisterium. I don’t really feel like playing Russian Roulette with my salvation. (And if you’re on the list, you’re thinking about your salvation a lot, trust me.) It’s the same criteria I used for wanting children--I wanted at least four. I don’t have any. But that didn’t mean that I’d be willing to use IVF or surrogacy to have children, because those things are not sanctioned by the Church. Wanting kids, and wanting life, are both good things, but just because they’re good doesn’t mean we can use any methods we want to achieve those ends. (For example, there’s talk in some countries about legalizing euthanasia to increase the pool or organ donors. This is not, to put it mildly, acceptable.)
The transplant process is long, detailed, and sort of scary. But the one thing that we don’t have to worry about is whether or not the Church approves organ donation, because it does.
Now that you know that organ donation is OK, here’s some tips on preparation! One of the best things you have going for you is that you are used to being very, very medically prepared. You know how to give meds, probably in various ways. You’re used to specialists. You know lots of things! That is hugely helpful both for you and your child, because you are used to Medical World. Some people go from having no long-term problems to being told they need a transplant and the adjustment is rough. So you are ahead of the game! Yay!
1. Check your insurance.
I believe that most, if not all, insurers cover transplants. I know Medicare does because I am on Medicare and I checked! They may even have a housing allowance (see next point) included in their converge and/or some sort of mileage reimbursement if you have to drive a long distance. If they do that is a very nice point. But know what they cover. Your team will have a person who just does insurance stuff, and you will meet with this person early in the listing process. But it’s a good idea to check your policy (policies) anyway when you and the doctors first start talking about it, because that can help with the next point--
2. You might have to relocate.
I am emphasizing might. I was very lucky and didn’t have to. It might even make sense to relocate permanently if the center is very far away, but that’s definitely something to talk about with your family and weigh the pros and cons. For my transplant, if I had relocated, I would’ve had to stay in that area for at least three months. So we also looked at centers near my family in Pittsburgh, so we could stay with family. Pittsburgh was our “back up” plan, and we also have relatives in St. Louis, so St. Louis was “the backup of the backup”. Generally it’s the “caregiver” (mom, dad, grandma, whoever) and the patient that have to relocate.
3. Not every center does every type of transplant or takes all transplant patients. Look at the totality of care the center delivers--don’t just look at numbers.
You (and, ideally, your child, if s/he is old enough to have a real opinion--not just “I hate all doctors”) need to be comfortable with the entire transplant team, which includes doctors, nurses, therapists (both psychological and PT/OT), pharmacists, and a whole bunch of other people. When I went to my first center to be evaluated, I hated that center, even though they’re a “very good” hospital and if I told you the name of it, you’d say “But they are so FAMOUS!” Yes, but “fame” doesn’t always mean “a team that you want to work with and treats you like a human being.” You’re picking them as much as they are picking you, to an extent. If a center has insane requirements in terms of finances, testing, or anything else that makes your eyebrows go into your hairline, note that. Sometimes you might not have a choice. But if you do, keep this in mind. (Also, of course don’t be so picky that you’ll never find a place! I’m basically telling you to be on the watch for any big “red alert” things.)
4. Do not drive yourself crazy Googling or going into Facebook groups.
You will hear all the complaining and terrible side effects and very little about how good life is post-transplant. (Mainly that you are still alive…..) Keep in mind that your child will not be magically medically-problem free post-transplant. You will still take meds. You will still see doctors. In my case, though, I do vastly less on a day to day basis than I did before transplant. I am much freer in terms of my time and in what I am able to do.
5. Ask all the questions, even the ones you think are stupid. Also encourage your child to ask questions.
When I met my surgeon, one of my biggest questions was, “how are you going to cut me open?” I DID NOT want to have my rib cage cracked open and even typing this grosses me out. I was really worried about this. My surgeon said he didn’t do that. BIG relief for me!
6. Yes, there will be a psychological evaluation.
It’s OK. They want to make sure that you can handle the medication schedule (if you’re reading this you’re probably A-OK at med schedules), scheduling appointments, and handling the wait that is going to come. They want to make sure you have a safe place to live, support, all that sort of stuff.
7. You have to be “accepted” as a transplant patient at your center.
Not everyone who needs a transplant gets one, obviously, but not everyone who needs one even gets accepted as a transplant candidate at a center. Again if you’re reading this, you probably don’t have to worry about this because you’re juggling a medically complex kid and you know the ropes. But I wanted to put this in here so that you didn’t get freaked out when they say “well we have to present your case and decide if we want to take it”.
8. Once you are on “the list”, talk to your child’s teachers.
Your child will be out of school for awhile--I would say at least three months, minimum. (Your team will be able to give you more specifics, but three months was how long I was out of work.) Talk to the school and make plans for schoolwork, etc. If your child is in high school you might want to rope in the guidance counselor and see if s/he can be the point person for contact and coordination. Same for any sort of CCD or Religious Ed you have for your child.
9. In this same vein, talk to any other doctors your child might have and let them know what’s going on, because they are going to need to submit records or have special appointments set up.
For example you'll need to talk to your child's dentist, and if it's your daughter receiving the transplant, an OBGYN. A dental checkup and an OBGYN check up, complete with pap smear, are needed as part of the transplant work-up process. Essentially everything gets checked to make sure that every part of your body (and I do mean just about every part) is working as well as possible before transplant. Most of this is done in a hospital setting, but some of it is outpatient. If your daughter is really young (like not a teenger) then you probably don’t need the OBGYN exam. But don’t quote me on that one! I have no idea what the male side might need done, so….parents of boys, you’ll have to look into that.
10. And finally, look into the spiritual care at the center.
See if you can meet with the hospital chaplain beforehand so you can get comfortable with that person. I was very lucky to have a marvelous chaplain. If your child is very young, it might be worth seeing if they can receive First Communion before transplant? Might be something to check out. I am not sure, in COVID tide, what the restrictions or rules on clergy are now, but I’d ask. If you’re able to stay local, then you can ask your priest to come to the hospital to anoint your child, hear his/her confession, and receive communion before surgery. (I wasn’t able to have the host but I could have a sip of the wine.) Be sure that you are getting the spiritual care that you need, along with everything else. It’s a long process and you need to be healthy, too!
Emily M. DeArdo is an almost 16 year double lung transplant survivor, cradle Catholic, and dedicated bibliophile.Her book, Living Memento Mori: My Journey Through the Stations of the Cross (Ave Maria Press) is now available! She's also a writer/editor/researcher for Take Up & Read. You can follow her at her website.