Bioethics Class: Lessons Learned from John Paul
A few times a year I speak to a friend’s undergrad bioethics class at Catholic University. This is what I tell them:
My husband and I both come from large families and we were excited to have a large family of our own. Things seemed to be going as planned since by the time my oldest child was 6, I was almost due with my 5th child.
When John Paul, our 5th, was born however, everything changed.
The delivery itself was traumatic during which JP’s arm was broken. His breathing was weak, and he was hardly moving. He was taken immediately to the NICU and 3 days later transferred to Children’s Hospital.
Within a few days his nasal canula was traded out for a ventilator. At five weeks old he was diagnosed with Spinal Muscular Atrophy a genetic, progressive, neuromuscular disorder.
At the time, SMA was the leading cause of death for children under the age of 2. My husband and I were told that slowly, every muscle in John Paul’s body would weaken to the point of atrophy. Most children with SMA die from complications of a common cold due to respiratory weakness. You can imagine how my husband and I felt being told that our baby would die from a cold—knowing that we had 4 other children at home who still were learning to cover their nose when they sneezed.
We also learned that both my husband and I are carriers of SMA, so we have a 1 in 4 chance of having a child with SMA, every time we conceive.
While we were at the hospital, there was a lot of pressure from the doctors to remove life support or worse. We had a pulmonologist tell us that we were playing God by keeping him on the vent and another doctor told us he wasn’t worth feeding.
We were put in touch however, with some other families who had children with SMA—who were living at home with their families and living way past their life expectancy, despite their very severe medical conditions. We desperately wanted this for John Paul.
At 7 weeks old, JP had a tracheostomy, Nissen and G-tube surgery. At 3 months old he was discharged home.
It took us 3 tries leaving the hospital before we were finally home for good. The first discharge, we were literally bagging JP on our way out of the hospital. The problem was not that JP was that unstable but that the hospital was so unfamiliar with discharging this type of patient that they didn’t realize they needed to test his vent settings when he had an HME in his circuit because he wasn’t plugged into his humidification—he needed more pressure support to breathe through the HME. Long story short, we ended up taking out the HME to get him home without crashing but that dried him out so much that we did 2 emergency trach changes in the first 12 hours he was home.
Our time at home took some serious adjusting too—we were awarded by insurance 20 hrs/day of nursing care but we went through 5 agencies and over 50 LPNs before we threw in the towel and ended up doing most of his 24 hour care ourselves. Pat and I became proficient in chest PT, using the cough assist machine, suctioning, nebulizer treatments and frequently using an ambu bag.
Slowly though, we got into a rhythm and our “new normal” emerged. With help from other families with SMA kids we figured out the fixes to issues like HME problem- installed and inverter in our car so we could plug in his normal humidification when he was on the road. The kids learned to hook up G-tube feeds and do physical therapy exercises with him as well as all of the standard baby fun—reading stories, peek-a-boo, dance parties…we took him to our parent’s house for dinner on Sundays and he even went to the older boys soccer games and a handicap accessible playground.
The whole family loved having JP in our lives. He taught us to love in a way that only he could— and not just how to love him, but everyone. He gave us an appreciation for how fragile and how precious life is. When you are living so focused on someone else’s needs, you are happy precisely because you are not worried about what you need to be happy.
John Paul did not die from a cold. After a series of MRI’s we learned that much of JP’s brain had wasted away and new concerns of a nueroblastoma were being raised. After a lot of prayer and consulting more than 1 priest, On February 20, 2013 at just shy of 15 months old, we removed life support and John Paul died in my arms.
My whole family misses John Paul immensely and yes, it hurts. It’s the kind of pain that no doctor can fix. It’s the kind of pain that people want to run the other direction from. But given the opportunity—I would do it all over again. While short, John Paul’s life brought a depth of joy and love to my family that is way stronger than the pain of missing him.
I’d like to share a contrasting story.
When I was about 8 months pregnant with John Paul, a friend from my husband’s work confided in him that they were expecting their second child. Pre-natal testing showed however that the baby was sick. The doctors told him that the baby would never walk or talk and probably not live more than a couple years. They were afraid. My husband tried to encourage him but a week later when they met again, they had had an abortion.
This man was sobbing as he told Pat that he felt like he had failed in his job to protect his child.
A few weeks after JP was born, we received a ten thousand dollar check from this man. He wanted desperately to be a help to the child we had that so closely resembled the child he should have had.
I think it’s fair to say that when people are contemplating abortion, they are hyper focused on a very immediate problem and rarely give enough consideration to the psychological impact of killing their own offspring.
Grief is hard work but when I lost JP, I had a huge network of family, friends, and clergy that knew my loss, some who could relate to my loss, all who were sympathetic and supportive. A person who aborts their child needs to grieve their loss just as much as anyone else but imagine how much harder it is to grieve in a healthy way when they are also dealing with the psychological side effects of their abortion which according to the American Pregnancy Association include but are not limited to:
Sense of loneliness or isolation
Loss of self confidence
Insomnia or nightmares
Suicidal thoughts and feelings
“We need a heart in love, not an easy life, in order to be happy” (St. Josemaria Escriva)
Every opportunity we have in this life to love comes with the vulnerability of knowing we could get hurt. Love is the willingness to sacrifice ourselves for another person. In every sacrifice, yes, there is pain, but isn’t it the pain that gives it value?
Think about it—do we brag about our easy accomplishments or our accomplishments that cost us late nights, blood, sweat and tears?
After John Paul died, my husband and I had to face the very real possibility of having more children with SMA. I have to confess, despite the beauty of JP’s life, I was afraid. I quickly found however that it is really depressing to live your life, making decisions that are motivated by fear. Ultimately, over the 4 years following John Paul’s death, I lost 5 more children through miscarriages. 2 of those babies, I lost in the 2nd trimester and they did have SMA. Despite how hard it was, giving birth to them, both around 15 weeks was an amazing experience. I was induced and delivered them in the hospital. A woman from a group that I was in touch with that supports families who miscarry, brought a container to the hospital that we were able to place the babies in with water and it simulated how they were in utero with amniotic fluid. Each baby was about as big as my hand and I could see all his little features perfectly—his eyes, nose, ears, mouth….I could see that they were both boys. Nurses were so struck by seeing a baby born intact at that age that one would leave the room and another would come in requesting to see.
I am so grateful for the time I had with JP and that ultimately I didn’t let the story end there.
While we were struggling to keep a pregnancy after JP died I saw a fertility specialist who offered IVF with PGD as a solution. My husband and I didn’t see this as an option so the doctor shrugged his shoulders and said “I guess you could get a dog.” I wanted to stop losing babies but he didn’t understand that I wasn’t getting pregnant just for my own self fulfillment. I saw another doctor who was proficient at actually diagnosing the underlying issues and she found that I had low progesterone—the hormone that serves to encourage the gestation of an unborn baby. Incidentally, cortisol, the hormone our bodies produce when we are stressed, naturally suppresses progesterone. As soon as my levels were normal again, I was able to have 3 more babies in less than 3 years.
Annalise was born 5 days late on the 4th anniversary of JP’s death. 18 months later, Max was born, and 16 months after Max, Flynn was born—he is almost 2 years old now and very effectively keeping up with his siblings.