March 21, 2004
brief life changed world in ways he’ll never know
I am sitting in my study, staring
at a blank screen. Some columns come so easy. Others are difficult, so
difficult you cry while you try to write them.
I’ve put off writing this
column, even though it’s been rattling in my brain for months. Perhaps
because I was tired of crying, tired of being sad.
For this is good-bye to you,
Patrick, my son.
And this, ink on newsprint, is my
My thank you to God, for the 23
minutes I spent with my son.
My thank you to Patrick, for
prompting me to take a hard look at my life and make some changes.
And my thank you to the friends,
colleagues and others who shared our family’s pain and eased our
A new arrival
Most stories start at the
beginning, not the ending. Let me backtrack.
My wife, Elise, and I got a
surprise shortly after my 40th birthday last April.
We were expecting. No, we
weren’t trying. Yes, we know what causes that.
With two kids already and a late
start to child rearing, we hadn’t placed family expansion plans high on
Once the shock wore off, we
started to get excited, if not giddy, about the new arrival. I’d be
bored with early retirement, right? And what do we need with free time?
Our girls, Emily, 4, and Sarah,
2, were thrilled at the prospects of a third child. They had been asking for
one for months, as if it was as easy as going to the toy store.
We spent the summer being silly,
going through names, fretting about re-doing rooms in the house. In August,
we decided we would attempt to learn the baby’s sex and we set an
appointment for a routine ultrasound examination.
I suppose I knew the news was bad
the moment I looked at the silent, intent glare of the ultrasound technician.
No chit chat. All business. Trouble.
Then, the talk from the doctor:
Something is wrong, seriously wrong. There isn’t enough fluid in the
womb, which means there’s something amiss with the baby’s organs.
Your baby is still alive, with an
emphasis on the word “still,” but not for long.
Death is imminent. Come back in a
few days to see if the heart is still beating.
Days turned into weeks. The
baby’s heart kept beating.
The next few weeks became a blur
of doctors, tests and theories.
Finally, facts replaced
You have a boy. Your boy has
Potter’s Syndrome. This means your son does not have any kidneys and he
won’t grow any. He will live as long as he stays in the womb.
Once he leaves the womb, he will
die, likely at birth.
There’s nothing we can do.
No cure. No miracle procedure. No hope.
Preparing for death
What does one do these days when
confronted with a great unknown?
Why, go to the Internet, of
We asked the great Google: Tell
us about Potter’s Syndrome.
And we found a Web site, www.potterssyndrome.org, which
told us we were not alone. Others had been through the ordeal we were
entering. We learned from their lives.
Have a plan, they said. When your
baby comes, he may come early. And he may still be alive, if only for a very
short while. Make sure you spend that time wisely.
On Nov. 2, 2003, we welcomed Patrick, named for my late
father, into our lives.
He was born and placed into his
mother’s arms, alive, but fading fast.
We knew this very fact made us
lucky. Parents of stillborn children, and most parents of Potter’s
babies, never get the chance we were given to say hello.
Our next-door neighbor, Julie,
was in the hallway with our daughters. After a few minutes, they came in and
said hello to their baby brother.
They gave him a powder-blue toy
puppy dog, resting it next to him on his mother’s chest.
A nurse took a picture of all
five of us, together for the only time, all smiling.
The girls stroked their
brother’s back and patted his head. And said good-bye.
Twenty-three minutes after he
arrived, Patrick died in his mother’s arms.
Our friend and associate pastor,
the Rev. Jane Voigts, who left the pulpit at Appleton’s First United Methodist Church to be with us on that Sunday morning,
Patrick had been returned to
My boss, Publisher Ellen Leifeld, has several sayings. Here’s one that
applies to what I am about to do: If your dad’s a cobbler, all the kids
I have this wonderful, quirky job
that allows me to write what I think, then put it in the newspaper and out on
the Web for anyone to read.
So, recognizing my indulgence,
Elise and I want to give thanks.
We’re thankful for our
faith, and for having clergy and friends like Jane and the Rev. Kent Ingram,
lead pastor of First
Our church family also extends to
our friends and fellow parents here, as well as those we worshiped with in Montgomery, Ala., our last home.
We’re thankful for them, as
well as our other friends and neighbors in the Valley and their seemingly
endless supply of well wishes, food dishes and flowers.
We’re thankful for my
colleagues at The Post-Crescent, who filled the gaps created by my
absences throughout our ordeal. Daily papers must publish daily.
We’re blessed to have
talented, dedicated health care professionals in the Valley, as embodied by
the care and concern of Elise’s obstetrician, Tom Reinardy
We belong to an Affinity health
plan, but our experience showed why we’re so lucky to have two strong
systems in the Valley.
Affinity referred us often to Theda Clark Medical Center, where we received genetics counseling
and extensive neo-natal tests.
Our thanks also to pediatric
cardiologist Janette Strasburger of
Children’s Hospital of Wisconsin-Fox Valley; neonatologist
Susan Sipes at Theda Clark Medical Center; and ThedaCare
genetics nurse Sharon List, who gave us hard answers and facts we needed.
When the end came for Patrick,
there were two others who helped: Tracy Schneider, a nurse at
Medical Center who specializes in helping families
facing such traumas, and Dan Densow of Wichmann Funeral Home.
A funny aside: I now measure time
in 23-minute intervals. If I’m in a meeting or a function, and I sense
that mark is near, I ask: Is what I’m doing now worth the entire time
my son was alive?
I realize that’s a tad
morbid. But it does help me build perspective. Time is precious. Life is
short. Am I making the most of it?
I’m also trying to enjoy
the blessings we have, particularly Emily and Sarah. We have two wonderful
children and, through them, we’re always young.
And we’re moving on. That
means taking risks and living life again.
Which brings me
to this piece of news.
We’re expecting again, due in September. All of our early test results
Sadly, on April
Andrew announced in a follow-up column that the expected new arrival had died
after 15 weeks. To read the column, click here.
information about Patrick’s brief life can also be found by clicking here.