Family Story Assets (Word Document, Photos)
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My name is Sue Brendel and I’ve
been part of the March of Dimes for more than 14 years. I have three children,
Sam (17), Kate and Morgan (almost 10). This is Kate’s story, and it’s also the
story of our whole family.
My husband Brian and I had
Sam after a normal, full-term pregnancy, although I was extremely sick for my
first trimester. After Sam, I had three miscarriages, all around 12 weeks, and
with no determination of the cause. This was just incredibly heartbreaking. When
I became pregnant with Kate, I felt super sick in the first trimester, as with
Sam, so I felt relieved.
At my 20-week ultrasound I
could see Kate sucking her thumb! I’d begun to feel better, but then I began
spotting. I owned a physical and occupational therapy business at the time. I
was at work with a new patient and I wasn’t feeling good. There was more
spotting, and my heart sank. I thought, “No, not again!” I knew that something
was wrong and went to see my doctor immediately.
By the time I arrived I was
in active labor, and was 3 centimeters dilated. The doctor told me, “You’re not
even 23 weeks yet. You know what this means…” The look on his face told me
everything: We were in trouble. I needed to get to 24 weeks. If she were born right
then, Kate’s survival rate would be 10 to 20 percent, at best. My husband
arrived, thank goodness, because I felt like I couldn’t breathe — I was in
shock. We tried to stop my labor, but then my water broke.
“If she’s going to have a
chance,” said the doctor, “we need to deliver her.”
And so we did, on December 1.
They’d told us she might not be breathing when she was born, but when she
arrived, the doctor said, “She’s trying
to breathe.” She weighed 1 pound, 1 ounce and was just shy of 13 inches long.
The medical team intubated Kate and rushed her to the newborn intensive care
unit (NICU). Later, Sam came in to meet his baby sister, and we had her
baptized. One of us was always with
her. We felt like we had to protect her and we just couldn’t imagine leaving
her without family for even a minute.
The next day, Kate had a
grade 2 brain bleed, but I was able to reach in to her enclosed bassinet and
touch her. I knew she was in trouble, but honestly I was just in shock and
could not believe we were there. At the same time, I was completely in the
moment and felt so connected with her the whole time. It felt like we were
touching even when we weren’t, and I remember feeling that way for months
afterward.
At one point, a tiny hand
grabbed my pinky and the other one grabbed my index finger. One of the nurses
saw this and picked up a camera. To this day that is one of my favorite
pictures: I’m smiling as Kate grasps my fingers.
Later that evening, she
developed a grade 4 brain bleed and the nurses seemed more concerned. Labs
showed that Kate’s body was shutting down, but she wasn’t in pain and looked
restful. She was on life support. We understood that it was time to call family
in to say goodbye, but I really didn’t know what to do after that, so I sent
them all away. My great regret, to this day, is that we never took a group
family photo with Kate.
As she was fading, the
doctors looked to me and Brian to tell them what we wanted to do. Our hearts
broke yet again as we removed her from life support — she’d had so many wires
and gadgets attached to her, and she’d had surfactant therapy three times to
help her lungs. She had been through so much.
Brian held Kate first, and
sang to her. “Babies should have lullabies,” he said to me. Then he handed her
to me and said, “Keep singing. Her heart is still beating.” And so we sang
together as Kate’s heart beat for another 14 minutes.
That is just the beginning of
the story, though. We left the hospital with her blankets — going home without
your baby is just so hard and sad. It was a struggle, and many of our good
friends didn’t know what to say or how to be. I decided I would write a letter
to teach people what to do, so I went to the card store for some good
stationary and I saw a sign for the March of Dimes at this store, advertising
Walk for America (now called March for Babies). I thought, OK, this is what
we’re going to do!
In my letter I told folks
that we were going to walk to raise money and to keep Kate’s memory alive. The
donations started pouring in and Sam, who was only about 4, asked, “Where does
all this money go?”
“It goes to the doctors and
scientists who can save the babies so they can go home from the hospital,” I
explained.
“Then we need to raise a
million dollars,” he told me.
We’ve done our best. That
first year, Sam was the top youth walker in the state of Washington, raising
more than $5,000. The next year, we were like — we can raise even more! (My
husband and I are slightly competitive…) The March of Dimes organizer told us,
“You guys are awesome — you’re the second-highest family earners in the state!”
Brian and I just looked at each other as if to say, “Second? No way!”
We attend the National
Volunteers Convention every year and I have realized that most of the
top-earning families are those who have lost a baby. And that’s hard, because
our stories don’t end with us holding a cute little baby who made it home. But
I try to remember that I am fighting for my kids, and for other families, so
that they never have to go through what we went through.
And when we come together
with other March of Dimes families I really feel connected, as if I’m in a roomful
of Brians and Sues. And we represent all the people who are trying to make it
better for every baby and every family. The March of Dimes gave me a purpose
and helped me through my grief, so I could move forward and do something to
help and to celebrate Kate, and that brings me joy.
