Wednesday, March 28, 2012

A Little Lie Won't Hurt

I am meeting with a state representative on Saturday to discuss Kansas H.B. 2598. Right now, I am going to focus on a specific aspect of the bill, an aspect that has already passed in Oklahoma. This bill has far-reaching implications that have nothing to do with abortion. It is potentially family-destroying and will lead to an increase in suffering. There are plenty of disorders that when diagnosed in utero can be treated immediately after birth, but there are also disorders which are invariably fatal.

When doctors are allowed to lie to their patients, not only is trust broken, but families are shattered. The doctor uses his or her faith as an excuse to violate his patients’ trust. The following scenario could become common if doctors are allowed to lie when they think a family might terminate. It may be difficult to read. I know it was difficult to write. No one wants to consider the possibility that something could be wrong with the baby, but unfortunately it does happen. Most families are lucky enough to have healthy babies, but you never know when nature will give you something different than you expected.

* * *

Imagine for a moment that you are a young man living in a state where doctors are allowed to lie to their patients because of their own religious convictions. You get married and decide to have a baby. Maybe it happens right away, and maybe it takes a while, but as soon as you see that little line on the test, you are in love.

You go with your wife to her prenatal appointments, hear the heartbeat at ten weeks, watch her belly begin to round out as she tells you she feels the first little kicks. At twenty weeks, you go with her to the big ultrasound. The doctor tells you the baby is healthy, but was too shy to reveal his or her sex. You are disappointed with not knowing, but at the same time, the surprise is exciting.

You and your wife pick out names. You paint the walls and decorate the nursery, maybe as a birthday surprise for your wife. You have a baby shower, and everyone is excited. Maybe this is the first grandchild on both sides of the family, and you are overwhelmed with baby gifts. You begin thinking about college savings plans, vacations you can take with your child, and wonder what he or she will look like. You can’t wait to meet your baby.

Full term comes and one morning your wife wakes you up to tell you she thinks she’s in labor. When you get to the hospital, you can’t help but notice your doctor appears nervous. You brush the thought of it aside and excitedly support your wife through her labor. You call your family, and they wait for the official announcement. She pushes and the baby is born.

It is a boy! But, something is wrong. He does not cry. He does not breathe. His heart still beats, and he struggles to breathe, but he never will. His lungs never developed because lung maturation requires amniotic fluid, and a baby can’t make amniotic fluid without kidneys.

Your son has Potter’s syndrome. The doctor knew it from that twenty week ultrasound, and did not tell you because he thought you might decide to terminate if you knew. Your family spent forty weeks preparing to bring home a healthy baby, and now you won’t be bringing home a baby at all.

You are devastated. Your wife cries convulsively as the medical staff futilely tries to get the baby to breathe. He is fading and the nurses still keep trying to save him. Finally, the doctor tells them to stop and let your wife hold the baby while he dies. This condition is incompatible with life, he says. You struggle to comprehend what that means.

Your son looks perfect, but he dies in your arms, having never taken a breath. You hear the cries of healthy newborn babies through the walls and see happy families in the hallways. You were supposed to be the happy family with a crying newborn, but instead, your room is silent

You take your wife home to an empty nursery. Her breasts fill with milk, but there is no child to feed. They are engorged and painful, but not as painful as her loss. You are numb as you make final arrangements for the child you wanted and planned for. You call the doctor’s office to get a prescription to ease your wife’s postpartum depression and grief, but they are avoidant and take two weeks to fill a single prescription. The doctor never apologizes for leaving you in the dark. You know he knew. “Potter’s Syndrome” was written onto your wife’s chart at twenty weeks.

You bury your child, the son you were so hopeful for, who you wanted to take fishing and to baseball games. Your family weeps in front of a tiny casket. They had great hopes for him, as well. Grandparents wanted to spoil him. Aunts wanted to snuggle him. Cousins mourn the loss of a playmate. You can’t contain yourself and weep over the casket, which is little bigger than a shoe box. He was to be your future, but he is gone and you are having trouble coming to terms with it.

His death shatters your relationship with your wife. You can no longer look at each other without seeing the baby. You are afraid of having another baby because what if it happens again? What if the doctor tells you everything is going to be all right, when something is horribly wrong? You go to marriage counseling, but the counselor can’t offer you anything beyond, “It was God’s will”, and that isn’t good enough. Your wife blames herself, you blame God, the doctor never apologizes for the lie, and nothing can ever replace the child you lost.

You can’t stand to look at the empty nursery. Your wife can’t either, and she says she can’t stand to look at you anymore. She moves in with her parents and a lawyer arrives with divorce papers. Your marriage is over. You are another statistic, another marriage that could not survive the death of a child.

You move on, but you can’t forget. You cannot bring yourself to trust another doctor, no matter their specialty. What is that doctor not telling you? What if he says you’re fine, but you really aren’t? You avoid them and skip your yearly physicals. If you can’t trust one doctor, you can’t trust any. You develop a dull pain in your abdomen, but still stay home. Finally, the pain escalates and you can’t take it anymore. You go to the ER and find out you have end-stage colon cancer. The doctor tells you to trust in God and pray. You call your ex-wife and tell her good-bye. She sobs into the receiver. She and her new husband bring you flowers, but she still can’t look you in the eye. You still love her. You close your eyes and your last thought is of your son.

* * *

Now, let’s go back to near the beginning and see your world from a different perspective. You go to the twenty week ultrasound with your wife. The doctor calls you into his office and tells you something is wrong. You are told your much-wanted baby has no kidneys and will die soon after birth. You get a second opinion, and the baby is given the same prognosis.

You are devastated. After much soul-searching, research, and discussion, you and your wife decide to carry to term. You go through the stages of grief before the baby is even born. He is still alive, and you decide to celebrate his life, however short it may be.

Your wife decides to be induced so the family can meet the baby while he is alive. You set a date, go over your birth plan with the doctor, and call a photographer from an organization such as Now I Lay Me Down to Sleep. You are nervous and cry over the little kicks and the motions of the baby felt through your wife’s skin. You talk to the baby, sing to him, tell him you love him. You know you won’t have much time.

A sense of peace washes over you on induction day. The delivery room is quiet as the baby is born. The staff and doctors are gentle and they respect your time. The baby is carefully placed on your wife’s chest and she smiles and strokes his head. Her tears fall onto his hair. You take note of him, memorizing every hair, every beautiful finger and toe. You never want to forget. The photographer and the rest of the family come in to meet the baby. They hold him and kiss him. He only lives for an hour and fifteen minutes, but in that short time, all he knows is love and comfort.

It is a sorrowful day, but also a peaceful one. You knew it was coming and you were able to come to terms with it. There is no empty nursery to come home to, no freshly laundered, neatly folded clothes. The funeral arrangements are already made. That hour and fifteen minutes were not full of chaos and fear, because you knew your time was limited and were able to make the most of it.

At the funeral, you celebrate your son’s brief life. The photographer’s pictures were beautiful and you cry over the slide show. You bury your son in a special outfit you picked out beforehand. No one should have to bury a child, and it is never easy, but it is far more peaceful when you know it is coming. Your wife started on antidepressants early. She does not mind looking at you because it brings back memories of your short, yet beautiful time with your son.

A year later, you decide to try again. At the twenty week ultrasound, the doctor tells you the baby is healthy and you are able to believe him. No trust has been broken. You plan for your new baby. Your daughter is born healthy and screaming. When she is older, you tell her about her older brother and show her the pictures. You don’t think anything of going to your doctor when the dull pain starts in your abdomen. You have no reason not to trust him to do the right thing. Your cancer is diagnosed early, treated, and years later, you dance with your daughter at her wedding.

* * *
Because we have ultrasounds (and there would be an uproar if they were taken away), we have the ability to diagnose disorders and defects prenatally. It is unethical for a doctor to withhold vital information from new parents, information that could help them prepare for potential stillbirth, neonatal death, or major surgeries. We can’t take back this technology and pretend it doesn’t exist. It is here, and it has forever changed the way we approach pregnancy and birth. We need to accept that, and be grateful that it can help prepare parents for tragic situations. Trust is so vital in our relationships with our doctors and other professionals, and for doctors to intentionally violate our trust without repercussion is unforgivable.  It is unconscionable to choose to increase a family's suffering when you could have helped ease them into a horrible situation.

This scenario takes into account just one aspect of H.B. 2598, but I believe this alone is reason enough to reconsider the legislation sweeping many states right now. I wrote it from the father’s perspective because most of these legislators are male. I know it was not easy to read, but a little empathy is vital right now.

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