Skip to content

‘Caring for Faith’ - Disabilities and medical discrimination

‘Caring for Faith’ - Disabilities and medical discrimination

When Brad and Jesi Smith were first told that their daughter might have the chromosomal condition Trisomy 18, doctors raised the possibility of an abortion. The couple declined. They knew they wanted to choose life for their daughter, whom they named Faith.

But even after Faith was born, the Smiths found they had to continue fighting to have her human dignity recognized by many in the medical field, even to obtain basic treatment for her ongoing health challenges.

For the past 12 years, the Smiths have advocated not only for their daughter, but for other children with disabilities, who are often considered “exceptions” in the abortion debate.

Brad and Jesi are both speakers for, and they work to connect children with disabilities and doctors who will support them.

This week, Charlie Camosy spoke with Brad and Jesi about their experience of embracing their daughter and championing her dignity in a field where many have refused to acknowledge it.

Subscribe Now

Can you tell us the story of your coming to know your daughter Faith? Begin, if you can, from when you first became aware she existed.

During a routine ultrasound, we were told that our daughter had soft signs of chromosome abnormality, which included calcification in the heart, cysts in the brain, clenched hands, etc.  We were sent to see a geneticist, who gave us more details and said these signs point to several possibilities including the diagnosis of Trisomy 18 (an extra copy of the 18th chromosome).  Then he suggested we get prenatal testing to confirm her disability, specifically an amniocentesis.

Given that an amniocentesis has a small chance of causing a miscarriage, we stated we would not get the testing. The geneticist continued to describe our daughter’s disability as a “fatal fetal anomaly” and said she was “incompatible with life,” even as she was kicking in the womb during the appointment.

The geneticist continued to push us to get an amniocentesis to confirm her disability.  We pushed back, and Jesi said, “No, we were not interested because it could harm her.” When he continued to press, Brad asked, “If we got the amnio, could you help our daughter?”

The doctor said “No.” Brad followed by asking “then what’s the purpose?” The geneticist answered, “Well, if you want to terminate.”

In unison, we responded “That is not an option.” Even then, the doctor was unrelenting, so Jesi ended the meeting.

Trisomy 18 children are aborted at rates over 90%.

How did you react to this diagnosis? How did your reaction compare to that of your doctor and the medical team?

We were going to love our daughter and take care of her the best we could, as every parent should do for their child. Most doctors offered no hope and said that she would not survive even after she was born. In fact, our family pediatrician dropped us without even telling us personally, and we had to learn this news from a cardiologist who was shocked by this unethical behavior.

We experienced doctors who lied to us and withheld diagnoses from us. One example of this was Faith’s short jaw, which was noted throughout her medical records but never mentioned to us. This can be a life-threatening issue, and it was for Faith.

We also had doctors who would not provide treatment options like providing us with a C-pap machine to help Faith breath at night. In fact, the head of the PICU told us, “No one does this for children like Faith.”

We learned the hard way that most doctors are taught that treating Trisomy 18 children is “a waste of scarce medical resources,” regardless of how plentiful the resources are in our nation. These children are dehumanized in the womb and the bigotry continues after they are born.

I understand you found some hope from a physician at the University of Michigan. Could you say more about this very different kind of experience? What do you think drove this very different approach?

We met Dr. Glenn Green, an ENT at the University of Michigan Mott Children’s Hospital. Faith was almost 2 years old when we first met him. She had already survived several near-death experiences.

Dr. Green was the first doctor to tell us that Faith had a short jaw. He immediately suggested she needed a jaw distraction. In fact, he referred to her as “an old lady” for this procedure because he usually performed it on infants. The procedure was very successful for Faith and changed her life because it ended the near-death situations from the breathing issues, and it even led to her taking her first steps shortly afterward because she could breathe.

What we learned is that it comes down to the individual doctors and whether they view Faith as a valuable human being. It is appalling that we need to convince doctors that our daughter has as much value and worth as any other patient, especially since we are paying them to treat her.

Dr. Green loves these children with Trisomy 18 and other disabilities, which fosters a desire to help them to the best of his ability. We see the same in other doctors who value life beginning in the womb. The doctors who do not value disabled children in the womb are the same doctors who will not treat them after they are born.

Make a one-time payment

It certainly takes fortitude to fight these kinds of battles against a powerful medical community and ultimately get Faith where she needed to be. I'm guessing your faith in Christ played a significant role in drawing the strength to get this done. Could you say more about that?

And any advice for Pillar readers who may find themselves in a similar situation in the future?

Hebrews 12:1-2 says “Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.”

Our view is that God has created each person in His image, and He has a purpose for every life regardless of length or accomplishments. He will give us the strength to fight the good fight, to finish the race, and to keep our Faith.

We work with lots of parents in the same situation that we faced and continue to face. We first say to them, “Congratulations, you’ve been given a great gift.” Our greatest advice from walking this path is to encourage others to read and listen to Scripture. Immerse yourselves in His Word because it completely changes our thinking and reorients our minds to His ways and not our own.

We would encourage your readers to “Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing (James 1:2-4).”

As someone who thinks a lot about health care, and particularly how Catholic health care can better reflect the love of Christ (especially for children on the margins of the culture), how do think contemporary health care needs to change in order to honor the equal dignity of children like Faith?

Jesus asked the question should it be lawful to save a life or to kill?  He told us that we are to love God and love others. Jesus spoke strongly about protecting the least among us, and in fact said it would be better to have a millstone wrapped around our necks and be cast into the sea than to harm one of His little ones.

Contemporary health care is filled with bigotry and discrimination aimed at disabled children.  Healthcare professionals should value the human being in front of them just like the Good Samaritan helped the half-dead man left by the side of the road. Doctors and nurses should not only “do no harm,” but they should do their best to help patients through their struggles.

When doctors are unwilling to treat patients like Faith, they not only kill the child in front of them, but they are killing medicine at the same time. Loving children like Faith by helping them instead of killing them through abortion or lethal neglect is not only good for the individual child, but also for the practice of medicine. Doctors and nurses become more compassionate when they treat disabled children, and they become better at the practice of medicine. All patients benefit from the challenge of treating children like Faith.

After Dr. Green was willing to care for Faith, Brad asked if we could send him other children to help. He said “Absolutely,” to which Brad responded, “We’re going to make you the expert.” By God’s grace, Dr. Green has become the national expert treating the airways of children with Trisomy 18. In fact, he has spurred many other doctors at U of M Mott Children’s Hospital to embrace the challenge.

Dr. Green and several other Michigan Medicine doctors have treated so many Trisomy 18 children sent their way that we now have a U of M study. Typically, only 10% of children with Trisomy 18 who are born alive will reach their first birthday. Even worse, when you consider the number of children killed through abortion and lethal neglect by doctors, only 1% survive to age one. However, the study by Dr. Green shows a very different story. When parents engage with full interventions, we have a 90% survival rate at the University of Michigan.

This is evidence that when love and care drive medicine, great things can happen. Amazing innovations are developed, and even more, amazing people come out on the other side of life’s challenges.

Subscribe Now