Protecting Life in Every Age and Stage, Part 3

Cindy Clefisch shares Part 3 in her series Protecting Life in Every Age and Stage. Read Part 1 here and Part 2 here.

The youngest of seven children, this farm girl now loves her home near Saylorville Lake. Cindy Clefisch is a blessed mom of twin boys who understands how far a mom can go to keep her children alive and healthy. She started her career in education and is amazed at the broad experiences she's had. Not so long ago, this devout lady went through despairing times. Never thinking she'd experience her own dark night of the soul, she's still working on fully placing her trust back in God's hands, and how a faith-filled Catholic can be defined. Writing about her faith and challenges helps motivate her to keep trusting, even when she can't feel the touch of the Master's Hands.

Our dreams came true on April first, and this was no April Fool’s. The family we spent so many years yearning for was here. Now parents of twin sons, Lucas and Aidan, were finally here to love and hold. Well, love yes, but not exactly hold. Aidan, our “little fiery one,” was put on a ventilator and placed in the Neonatal Intensive Care Unit.

From our very first ultrasound, doctors questioned whether Baby B would, indeed, survive. Each time we understood that they must tell us all the practical statistics, and each time we would respond that we believed in miracles. One of the hardest times was when the specialist said he couldn’t tell us what kind of ‘quality of life’ this Baby B would have. Thankfully, I had the presence of mind to reply, “Our son was created in the very image and likeness of God. I’m not sure what better ‘quality of life’ we could ask for.”

So many friends, family, and church members were praying for us! We were blessed that our pediatric cardiologist never referred to our son as anything other than “Aidan.” He acknowledged that our son already had a name and a purpose for his life.

We knew Aidan would be born with a heart abnormality which would be better understood after birth. It took an extra three or four days before Aidan was diagnosed. His official pulmonary-cardiac diagnosis included *Tetrology of Fallot and **Pulmonary Arterial Sling (see further information below). It was the later diagnosis that was quite rare. Tetrology could be corrected by surgery here in Des Moines. Luckily, our cardiologist knew where to turn for help. Only a few places in the country were able to perform this repair surgery. Dr. Brown at Riley’s Hospital for Children in Indianapolis would take our case.

We had plenty of time for the medical staff to get the scans, x-rays, and reports to Dr. Brown in Indianapolis. Our plan was to grow Aidan as big as possible and plan the surgery for mid-September. Our insurance provided a family advocate to facilitate communication between the family, hospital, and insurance company.

Everyday, Lucas and I would travel back and forth from home to hospital. Nursing Lucas and pumping for Aidan made me feel like I had my own dairy business, but boy did we love every hiccup, smile, wide-eyed look, and peaceful nap! We got to welcome him home on Mother’s Day weekend 2008, about a week after my original due date. You can understand how ecstatic we were to have our whole family under one roof!

From mid-May to mid-September, Aidan was under our care. He relied on oxygen 24-hours a day. He had an apnea monitor with an alarm that would wake the dead if Aidan stopped breathing. The monitor also had to remain in the exact place in order to keep it from going off. I can’t tell you how many times it went off as he started to become a wiggly three-month-old. Oh how our hearts stopped whenever we heard that alarm!! I would immediately grab the ambo bag and was always ready to do infant CPR to save Aidan’s life. We all complain about the stress of parenting, stress at work, and stress while driving. However, I guarantee you that the ordinary, daily life stress was fractional to the amount of stress that comes from knowing that at any time your precious child could stop breathing and die. If that were to happen, the quick reactions of my husband and I were all that stood between Aidan and death.

Pulmonary Arterial Sling is a condition where the pulmonary artery is wrapped around the trachea. As the Pumonary Artery grew, it restricted the trachea even more…squeezed it even tighter. It was like Aidan was being strangled on the inside. There was a …finesse to growing Aidan as large as possible, but not so much that his trachea was completely crushed. Aidan was born weighing 3 lbs. 7 oz. Instead of growing to 12 pounds before the surgery, he had grown to 10 pounds by the beginning of September. At that point, Aidan needed the pressure of the ventilator to keep his airway open. He would be sedated and rely on the ventilator to breathe for over five weeks. The longer he stayed on the ventilator, the less likely he would be to be able to eventually breathe on his own.

Since we were in constant contact with Riley’s Hospital for Children, it was easy to arrange a flight to take Aidan to Indianapolis two weeks before the scheduled surgery date. We quickly drove to meet him there. We expected things to go quickly and smoothly between his admission and surgery. Unfortunately, it didn’t move quickly or smoothly. We continued to wait for the insurance company to approve the surgery. This surgeon wasn’t “in our network.” In fact, no one in our network had the skills required to save Aidan’s life. We were frustrated because this wasn’t a new development or an unplanned surgery. Everyone was aware of Aidan’s condition and the surgery required after his first week of life. Then, I received the worst phone call of my life.

It was the advocate from our insurance company, and she had bad news. She told me that the insurance company did not approve the surgery. Clueless, I remember shaking my head and asking her what she meant by that. As it turned out, the insurance company had made a “business decision.” The risks of this surgery were high. His survival rate lessened every day.

“I’m very sorry,” she said, “but we aren’t going to cover the surgery.”

“I don’t understand,” I replied. “We knew Aidan would have to have this surgery. He can’t survive without it.”

Again, she apologized and said that the surgery was not going to be covered by our insurance policy. No baby had ever been recorded having Aidan’s exact diagnosis and survived. These risks were too high for our insurance company to take the financial risk of saving his life.

The brevity of the situation started to sink in. “You’re just going to let my baby die?” I asked. “Why do you want him to die?” I literally just kept shaking my head in disbelief.

She didn’t have an answer for me, just that the surgery wouldn’t be covered.

Can you imagine hearing those words? Knowing that your child had a 0% survival rate, that the surgery could cost well over a million dollars, and the insurance company you pay for deem the surgery to save your child’s life not worth the risk?! I can’t even describe my reaction. I sobbed like I’ve never sobbed before. I was heartbroken, confused. And the growing anger inside me would not be quelled. This was our BABY. It was our SON we were talking about! He was already a living, breathing, smiling, giggling, HUMAN BEING! And now, our insurance company decided his life wasn’t worth saving? The financial risk was TOO HIGH A PRICE TO PAY?! They were going to sit back and watch our dream come true die in front of our very eyes?! That’s it? They had the right to do that?!

Either time stood sill our I had stepped into a place where time no longer existed. Our Aidan. Our little fiery one. The was child we believe God pre-ordained to belong to us from the beginning of time. It was almost if we had accepted this little, precious life from God himself. We felt passionately that in some, unforeseen way, the two of us met with God himself. He told us there would be a precious one created in His very likeness and image. The baby would need parents who would be willing to place their lives on hold and fight for his very life, fight for his right to exist in this cruel world. More strength, stamina, faith, and determination then we knew we possessed would be asked for. But if we would accept the challenge…oh the love he would give. The smiles, cooing, the giggles, and sighs, and the feeling we would get when his eyes met ours …. oh, that joy would be otherworldly! Would we raise this precious little one? Even without knowing if we truly possessed the passion this child required, we said, “Yes! A million times yes! He is meant to be ours!”

And now the life God entrusted to us would end, not because we lacked the dedication, love, or even the medical technology. It would end because some board director didn’t want to be bothered by the chance that saving this life might cost him one of his hundreds of thousands of dollars. That person would never know Aidan’s smile, how he was born knowing how to raise one eyebrow, or how his face lit up when he saw a helium balloon. Aidan’s life wasn’t worth the financial risk. Period, end of story. The board member would never know what Aidan was destined to do in life. Would Aidan find the cure for cancer, set a world record, or be the best dad in the history of human-king? No. That was a risk that wasn’t worth taking. Aidan’s life, our life with him, wasn’t worth the risk.

There have been many times I’ve been glad that our Catholic faith includes so many visual images. We see Christ in his suffering on the cross, Mary as she is assumed into Heaven, the saints and their sacrifice, even how God is like a shepherd and we are his flock of sheep. What is a life worth? How does one decide that? I literally looked at the crucifix. There Jesus was giving everything He had the power to give for our salvation. One life. HIS life. His sacrifice. And that’s when I had this realization. What kind of sacrifice is my son’s life worth? EVERYTHING! Is it worth a lifetime of debt, is it worth the possibility of never owning another home, or another car, or taking a family vacation? Was our son’s life worth counting pennies for the rest of our lives? Never accumulating a retirement account or the comfort that came with having financial assets?  Was Aidan’s life worth a lifetime in debt? Yes! A million times yes! Aidan’s life was worth the chance of financial ruin. The love, joy, and hope our family could find was worth it if we had the chance of living our lives together.

We decided that day that the insurance company doesn’t have the right to choose whether our son lives or dies. That right belongs to God alone. We would fulfill our promise to sacrifice, work tirelessly for, and ensure that this child created in HIS own image and likeness would get a chance to live another day. The risk wasn’t one that the insurance company was willing to take. We, however, would be very willing to take it. And we did.

After almost 10 hours on the heart-lung bypass machine, the surgery to repair Aidan’s pulmonary and cardiac function was successful. The first bill we received from the hospital was for over $378,000, but we were convinced that Aidan’s life was worth it.

In the future we look forward to a world where parents don’t have to choose between saving their child’s life or the possibility of a lifetime of poverty. We still don’t understand how or why an insurance company has the right to deny lifesaving surgery. It is unethical at the very least, maybe even bordering on evil. We never dreamed that we would have to fight our insurance company to protect the life of our son. This is only one example of the million ways we must protect life at every age and stage. We are grateful for God’s abundant blessings.

Afterward: Eventually the insurance company reversed their decision and decided that they would pay their share of Aidan’s surgery. We still accumulated costs but were spared financial ruin.

*Tetralogy of Fallot: A combination of four heart defects that are present at birth and account for about 10 percent of all congenital heart disease:

Ventricular septal defect (VSD)A hole between the two bottom chambers, the ventricles, of the heart that permits oxygen-poor blood from the right ventricle to mix with oxygen-rich blood from the left ventricle.

Pulmonary stenosis: Narrowing of the outlet to the pulmonary artery area with an abnormal pulmonary valve impeding blood flow from the right ventricle to the lungs.

Right ventricular hypertrophy (RVH): Thickening and enlargement of the muscle of the right ventricle.

Overriding aorta: A case in which the aorta overrides or straddles the wall (the septum) between the ventricles, permitting oxygen-poor blood to flow through the VSD into the aorta.

Open-heart surgery is done on patients with tetralogy of Fallot in infancy or early childhood. Untreated tetralogy of Fallot is usually fatal before age 20. With open-heart surgery, the patient has an excellent chance of survival. Source here.

**Pulmonary artery sling (also known as an “aberrant left pulmonary artery”) is a rare condition in which the left pulmonary artery (which receives blood from the right ventricle and carries it to the left lung) had an abnormal origin and course as it travels to the left lung. Instead of branching off from the main pulmonary artery, as it usually does, it forms as a branch off of the right pulmonary artery. It then passes between the trachea (or windpipe, which carries inhaled air from the throat to the lungs) and esophagus (a muscular tube that carries food and liquids from the mouth to the stomach) to reach the left lung.

Although pulmonary artery sling doesn’t block blood flow to the lungs, it’s often associated with severe tracheobronchial anomalies (problems with the trachea and bronchi, the air tubes at the bottom of the trachea). The trachea may develop abnormally and often has an area or areas of narrowing (this is called “tracheal stenosis”).

All children with symptoms and the presence of a pulmonary artery sling need surgery. The outcomes of surgery depend primarily on the severity and extent of the tracheal narrowing. Source here.