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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