Cystic Fibrosis: A Little-Known Front in the Pro-Life Battle

In a recent online debate I had with someone about abortion, they posed the question: “Do any of your children have cystic fibrosis?” When I responded that I did not, but I have friends who do, the immediate reply was, “So they were ok with bringing a child to term (it can be found in 1st trimester) to live a short life of suffering?”

I responded that killing a sick child is, for people like my friends, never even an option. But the question nagged at me. Something told me this was an inquiry from experience, and I wanted to know more. I do have friends with a child who has Cystic Fibrosis, but like so many friends I’ve made over the years, we’ve never met in person. We’ve corresponded over the Internet for the better part of a decade, and while I see their posts on Facebook about raising money to fight CF, or the struggles they have with their son, I have never witnessed first hand what they go through. To make matters worse, I wasn’t fully aware of just how debilitating and life-threatening CF truly is.

So I reached out to my friend, Scott Broadway, to ask him about his experiences. What he told me shocked and saddened me, and I realized that this is a fight that many in the pro-life movement — even those who are reasonably well informed — know little about. Scott and his wife Allison live near Orlando, Florida and are parishioners at All Souls Catholic Church. Their oldest son Scotty has CF. Their youngest son Lucas does not. They are expecting a third son named Landon in September 2013.

Scott&Family2

The first thing that Scott told me was that 16 out of 17 children discovered to have CF in the womb are aborted – a staggering 94%. In addition to the 80% of Down’s Syndrome children who are killed in utero, eugenic abortion is a mind-boggling problem in America.

I wanted to know more, and Scott agreed to an interview to help raise awareness of this difficult issue.

 

Anyone can look up a medical definition of Cystic Fibrosis. From the perspective of a parent of a child with CF, can you explain what this disease is and what it’s like to live with it?

Within days of my wife and I becoming new parents, our son Scotty was hospitalized and later diagnosed with cystic fibrosis. We were terrified at our first doctor’s appointment at the CF clinic. The pulmonologist gave us a few analogies to help us wrap our head around our vulnerable newborn son’s disease. “Having a child with CF,” he said, “is like owning a British automobile.” It requires quite a bit more maintenance than a “normal” car. Several of the systems will never work the way you expect. But if you take good care of it, it can be very rewarding. An incomplete analogy, but it lightened up the mood a bit.

He also explained how CF usually varies from person to person. There are over 1,500 gene mutations (many of which are still misunderstood) that can result in CF, and any given person who has CF inherits a few of those mutations from their parents. In most cases, though, CF means that you have problems with your lungs. A genetic defect in the material that makes up your mucous membranes means that you can’t produce “normal” mucus. This is problematic because the lining of the lungs cannot fight bacterial infections effectively and instead produces thick, clogging mucus that makes you cough. Eventually, this starts damaging your lung tissue and makes it difficult to breathe. Respiratory therapies are a daily part of living with CF.

Other common symptoms include the inability of your pancreatic enzymes to reach your intestines and help digest fat and protein. This prevents you from getting proper nutrition or gaining enough weight. My son takes enzymes before every. Single. Meal. On the other hand, he can eat tons of calories and yummy fat and lots of salt and not ever worry about it…that kind of thing is good for him!

I often get caught up in how much my son’s CF had changed our family’s life that I lose sight of how he perceives it. My son’s hospital recently produced a very compassionate video that explains what it feels like to be a kid and have CF.

 

What is the life expectancy of someone living with cystic fibrosis?

When CF was first identified in the 1930s, children regularly died under age 5. As doctors learned how to develop better lung therapies, this extended toward the teens. My wife’s cousin, Christina, had CF. She passed away in 1997 at age 14.

Believe it or not, 1997 is like the dark ages when compared to today. The Cystic Fibrosis Foundation is at the forefront of research to cure this disease, and they say that kids like my son born recently will have an average life expectancy of 37 due to the latest therapies available.

That’s less than half a “normal” life expectancy. A very hard statistic to hear, especially since 37 is an average; remember that this disease varies radically from person to person. Though prenatal tests can easily identify whether you express the genes for CF, doctors are still very far from being able to predict the severity of the disease.

My friend Jamie Crane nearly met his end with CF at age 26. In early 2012 his lungs were nearly failing. Fortunately, a double lung transplant saved his life. Later that year he married a beautiful young woman and a year later he’s doing great. He has started a foundation to benefit lung transplant patients.

At the other end of the spectrum, Jena Cassalina lost her life at age 13.  In 2006, toward the end of her fight, her family took her to France seeking intercession and healing via Our Lady of Lourdes and St. Bernadette. Jena’s mother Margarete chronicled these struggles in her book and her blog “Beyond Breathing.”

And then there is Boomer Esiason’s friend and colleague, Jerry Cahill, who at age 55 almost lost his battle to CF. A timely double lung transplant saved his life, and Jerry continues to raise tons of money and awareness for CF.

We all know we will die. We don’t know whether we will face an early death or will see the dignity and infirmity of old age. The difference is that my son faces a daily fight against the disease that will probably kill him. As a father, I still don’t know how to explain this to him. Or to myself.

 

There is a higher rate of abortion in pregnancies where CF is detected than there is even with Down Syndrome. Why do you think that is?

It is stunningly high. We already know that Americans kill approximately 9 out of 10 babies diagnosed in utero with Down syndrome. The numbers on CF are a bit more private, unfortunately. One of the only known statistics comes from a Kaiser Permanente report indicating 16 out of 17 babies diagnosed with the most serious CF mutation were killed before birth. If one in every 3,000 babies is born with CF, that means about 1 in 178 is conceived with CF. A huge number of couples are aborting these children and dealing with that kind of loss and shame. They do so largely because of today’s near-universal access to prenatal testing. This testing is unfortunately biased toward what one author terms “commercial eugenics.”

These astonishing CF abortion numbers could infer that our country is focused on eliminating this disease. However, if Americans were really serious about preventing the genetic transmission of CF, all babies with at least one copy of a CF gene would be culled or sterilized because they are “genetically unfit.” This would mean that 10 million people in the US would be “unfit” since they carry at least one copy of one CF gene mutation. Since we are not yet at that dreadful point, we can draw only one conclusion about today’s CF abortion statistics: killing a baby with CF lets parents avoid the inconvenience and suffering of caring for a child with medical problems who may die young. Mother Theresa had a better phrase for this selfishness.

This moral poverty is clearly evident if you look at a recent case where an expectant couple was not offered a blood test to identify CF in their unborn daughter. After the baby was born, they sought legal revenge on their medical providers for not giving them the opportunity to kill their supposedly-burdensome daughter. A judge agreed with their case of “wrongful birth.”

 

Have you and your wife faced pressure from doctors and medical professionals to either not have children, or to abort the children you have?

Sadly, yes. Ubiquitous access to prenatal screening also means that nearly every OB/GYN’s practice is conditioned to preach contraception for CF carriers. A scared pregnant mother is also particularly vulnerable when you embellish to her how much her baby with CF will suffer, and how much her life will have to change when dealing with the child’s chronic medical problems. This is manipulation, not compassion.

We know this firsthand because my wife and I had a struggle with infertility. In the end, we only needed very minor pharmaceutical intervention to conceive. When talking at one of the fertility clinic visits, the endocrinologist made sure to tell us about a technique where she can conceive embryos in vitro, test them, “screen out” embryos with CF [her own words], and implant only “good” embryos. Horrified, my wife and I let her know what we thought of that! But this type of consultation happens EVERY DAY. Fertility doctors who already play god with embryos can easily manipulate the delicate emotions of infertile couples and assure them that they can have a perfect baby without the inconvenience of CF.

We’ve even had friends and [even more sadly] family members critique our *intensely* *personal* *marital* decision to have more children. We’ve even been asked about it *after* becoming pregnant. Since my wife and I both carry recessive CF genes, each time we conceive there is a 1 in 4 chance the baby will have CF. If you forgot your primary school biology, here’s what that looks like.

Prenatal diagnosis can be a good thing to inform parents when prenatal or postnatal intervention is necessary to save the child’s life. However, these sort of tests are seldom framed with such benevolent intentions. They are dramatically increasing the incidence of abortion. Newer tests require no amniotic fluid and can use a simple blood sample from a pregnant mother. Hidden within these tests is the false promise that if you “find out earlier” you can abort earlier, and maybe you can pretend like you didn’t kill your child. [If you are reading this and have had an abortion because of CF, please please please go to Rachel’s Vineyard to find out more about post-abortion healing.]

Am I categorically opposed to prenatal testing for CF? No. We’ve done them for our other two children because it is the responsible thing to do. You just have to inoculate yourself against what you are told by pro-abortion healthcare providers.

 

I’ve been aware of Cystic Fibrosis for a long time, but I never knew much about it. Until recently, I had no idea how intense the fight is over right-to-life for those children determined during pre-natal screening to have CF. Why do you think pro-lifers are largely in the dark about this issue?

The numbers on CF and abortion are kept intensely private, as if it is some sort of “medical decision” between spouses to kill a child out of selfishness. That Kaiser Permanente report is one of the only studies of its kind. My wife and I hope that the pro-life community remembers to preach how all children are gifts and deserve life, even those with CF, Down syndrome, spina bifida, Trisomy-18, anencephaly, and all other medical conditions. An end to abortion will only happen when our culture has no selfish desire to abort children and puts the force of law behind those values.

 

Is there a cure for CF on the horizon? What will it take to get us there?

Yes, absolutely! CF is one of the diseases that is very, very close to a real cure. In 2012, after years and years of research and testing and hopes and prayers, Vertex Pharmaceutical introduced Kalydeco, the first drug that treats one of the underlying genetic causes of CF. My wife and I know some people who have been prescribed this drug, and they are truly feeling better. Vertex also has more promising CF drugs in the pipeline within the next 3-5 years. Vertex’s success would never have been possible without the concentrated force of research and fundraising from the Cystic Fibrosis Foundation.

The UK is working on an ambitious gene therapy project to cure CF. The last I checked, the study was running low on money and behind on time, but the ultimate results may be even more promising than pharmaceutical therapies.

 

How treatable is CF? How far have things come in terms of making the lives of those with CF comfortable and manageable?

Remember the British automobile analogy? CF can be very time-consuming and very expensive. Doctors and therapists struggle to develop therapies that CF patients can actually do at home and don’t require half a day; if a home therapy isn’t very convenient, a patient won’t comply very well and it won’t be very effective. CF can also be extremely expensive. I struggle ALL THE TIME with all of the pharmacies and doctor’s offices and medical suppliers. And I’ve got fairly benign private health insurance! Based on what we know from friends, public health insurance adds an exponentially worse headache because you must fight to justify every $5,000 prescription and $13,000 machine and $2,000 test and $20,000 hospital stay.

This is best illustrated by the Irish National Health Service. A single patient’s yearly Kalydeco costs exceed US$200,000 because of how Vertex chooses to price their products. Ireland initially rejected the drug because it was too expensive. I suppose their actuaries decided that it is less expensive to spend gobs of money to hospitalize suffering CF patients than to give them a drug that fixes a root cause of hospitalization AND prolongs the patients’ lives. Fortunately, the Irish government changed their minds and will provide the drug to the patients with the most medical need. Politicians and activists must continue to fight for the rights of the sick and vulnerable to prevent rationing and a soft and seductive kind of state-enforced euthanasia.

 

Is there anything you’d like people to understand about living with CF that isn’t widely known?

Isolation separates the CF world. Friends and family often don’t know what to say and don’t understand why you have to be so diligent with therapies and avoiding infections and getting good nutrition. Sometimes they become distant. CF patients and their families need lots of compassion and support but seldom get enough of it. This cultural gap needs to change if we expect scared parents to stop aborting CF children (or any other children, for that matter).

Did you know that CF patients should never be close to one another? They could exchange their germs and catch serious lung infections. No, you can’t catch anything from a CF patient. Your lungs are healthy and can fight common bugs like Pseudomonas aeroginosa and Burkholderia cepacia.   At CF fundraisers, CF patients are barred from being close to one another for fear that they might exchange these dangerous germs that can permanently infect their lungs. As a result, people with CF usually don’t know many other people with CF. The internet changed this entirely. The documentary film “65_redroses” describes one woman’s friendship with other CF patients online as she waits for a lung transplant. Through Facebook communities, my wife has met tons of other CF parents and patients and healthcare providers who help share medical advice, sorrow, prayers, and victories. We really don’t know what CF was like before everyone could find one another and discuss how we’re going to fight and cure this thing.

22,375 views

Categories:Pro-Life

27 thoughts on “Cystic Fibrosis: A Little-Known Front in the Pro-Life Battle

  1. Slats says:

    I am sure, statistically speaking, that there are people who have aborted their CF children who have read this article. I am surprised that none of them have left comments to justify themselves, to say, “How DARE you criticize my decision not to bring a child into the world for a short life of suffering!” I hope that such individuals read the comments. No good Catholic I know would want to rub your nose in the wrongness of that decision to make you feel bad. However, if you do come to acknowledge that killing the poor child wasn’t and isn’t the answer, that’s when God’s forgiveness and healing can come in. God forgives all, if we just open our hearts by acknowledging that what is right and wrong is what He says is right and wrong, not what the world says is right and wrong.

    1. Jeremy says:

      I don’t remember any passages in the Bible that speak about abortion. Could you please reference which passages you are referring to.

      1. Slats says:

        I made no reference to Scripture, direct or indirect, so I’m not sure why this comment was written in response to mine.

        That abortion is wrong is fairly clearly taught in Scripture by 1) Thou shalt not kill; 2) the repeated references to God’s horror at His people’s pagan actions of child sacrifice; 3) Ps. 139, and 4) Jesus’ preferential love for children. However, even if it weren’t, for Catholics, “that’s not in the Bible” has zero power to end an argument, as made clear in the Vatican II document Dei Verbum (The Word of God). The Word of God is found both in the Holy Scriptures (the Bible) and what has always and everywhere been taught by the Church. We have voluminous documentation from the second century onward of the Church teaching the wrongness of abortion. The Church and theologians weren’t always definite as to when ensoulment took place in the unborn child, but abortion was always and everywhere held by Christians to be a heinous wrongdoing regardless. Keep in mind that up until the Protestant reformation, with the exception of the separated Orthodox brethren (not an issue in Western Europe), “Christian” and “Catholic” were a redundancy; if you were one, you were the other. Abortion has always and everywhere been taught to be wrong. The Church’s resistance to abortion has increased in modern times with the growth of genetics and embryology. Now, thanks to scientific information, there’s no excuse for failing to believe that human life (if not human ensoulment) begins when the sperm fertilizes the egg. The formation of organs, heartbeat, the development of clear hominid appearance, and the beginning of brain activity – other reasonable secular standards of argument for personhood – have all taken place by the time most surgical abortions are performed.

        Between Christians and seculars, the usual common standard of beginning to dialogue on what can be agreed on in terms of a moral code is that it is wrong to kill an innocent. In terms of actions, the baby in the womb is more innocent than any other conceivable (other than Mary, for Catholics) human beings. Please research the means by which surgical abortions are done. They are no passive action, but acts of extreme physical violence and aggression against these innocents.

        I am aware that there are some extremely indignant folks out there there who claim the Christian label and say otherwise, but I believe it’s quite clear that one cannot possibly be at once a well-intentioned follower of Christ and believe that procured abortion is not a gravely evil act.

        1. Jeremy says:

          As I suspected, your statements are based on Catholic interpretations and not on actual Bible passages. Any references to women’s rights that may have been available in the time of Jesus never made it into the Bible.

          1. Brian says:

            Jeremy, 2+2 is not in the Bible, either, but do you argue against it equalling 4? That being said, I’m not really sure what your point is, but here is something for you to ponder.

            The Bible was compiled and declared complete by none other than the Catholic Church. If you are willing to say that the Bible is a source of authority, which it sounds like you are, it follows that you must also be willing to say that the compiler of the Bible, the Catholic Church, is a source of authority.

  2. Leanne says:

    Shocking article. Our daughter lost her battle with CF 3 years ago at age 29. She was bothered more by asthma than her CF, but one complicates the other. She led a full life and enjoyed every minute of it! She went to college on a cheerleading scholarship and became a Registered Nurse. She married and had a baby girl.. Unfortunately, her decision to become a nurse was her downfall. She contracted a staph infection that affected her lungs and her immune system was just not strong enough to handle it. Would we ever have considered aborting her??? Never! While her life was much too short, she experienced so many wonderful things and became an inspiration to so many people! When asked if I was “mad at God for taking her away” my response is always that I am thankful because He trusted us to care for her while she was here! So many blessings would have been lost without her!

    1. Gerrie says:

      Thank you Leanne.

  3. Shari says:

    Thank you for this article. God bless you for sharing your story! My mother-in-law told me a few years ago that because she had had two sons suffer (and eventually die) from CF, she had planned to abort her third son, MY HUSBAND, prior to his birth in 1965. I know I should have been grateful to her for not going through with it, but I’ve been angry that she would have even considered it. I can’t imagine where I would be without my wonderful husband and three AMAZING children. The decision to abort has ramifications far beyond the parents and immediate family. I have always been pro-life, but after hearing my mother-in-law’s confession, I have become an even great advocate for life.

  4. Gerrie says:

    Thank you for this article. We have 10 children. Two have CF; they each inherited 2 copies of deltaf508, the most common mutation. They are 22 and 19 and are healthy due in large part to excellent aggressive preventive care and intense aerobic exercise (competitive cycling). We have received some advice to not have more children, or to abort, which we rejected. One priest friend of our’s had this to say in regards to whether or not we should be open to more children after our 19 yr old was born: “We are all born with original sin, that’s much worse than any physical illness.”. The rest of our children practically owe this priest their lives ;) Thanks again.

  5. Melissa says:

    It just makes me sick to hear the number of babies aborted because they have CF, or any other disease. Particularly with CF, you do not know how severe the condition is – there are some links to the type of mutation, but it really is the individual. And still yet, hear of cases all the time that were improperly diagnosed. Had I died at 10 or I live to be 100, every child should have an opportunity. You never know the positive impact one person can have, even with a predicted shortened life span. Not right to take one year, one day away because of fear.

    Thank you for taking the time to write such an article and hopefully open some eyes. No, CF isn’t easy, but I’d still like to think that as a 31yo CF patient I’m a positive contributor to society – serve as a substitute teacher, children’s ministry leader….

  6. Scott says:

    Thanks so much for the kind comments. And thank you to Steve for providing a venue for this kind of awareness.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

STAY CONNECTED


DON'T MISS A THING

Receive our updates via email.