Nothing in life can really prepare you for the experience of seeing your child lying sick and frail in a perspex box. Nothing prepares you for the
terror and helplessness of knowing your baby might die. This is the greatest shock that
many of us will know in our lifetimes and yet support for fathers in this situation can be very thin on the ground.
Here are a few suggestions that might help and some experiences shared by other fathers with babies in the NICU.
Go easy on yourself. No one expects you to be a superhero.
People usually focus on the mother. Realize that this doesn't mean they're ignoring you.
Find outlets separate from your wife, family, and anyone else who knows much
about your baby being in the hospital. Try sports, exercise, or a hobby.
Your partner may blame herself. Support her and gently try to convince
her that a premature baby is no one's fault.
Help your wife in practical ways. If she's expressing, it's a one-woman job but
you can keep her company and help.. Get the jars, get the pump ready. Bring the
milk to the freezer, etc. Deliver it to the hospital.
If you had a nursing baby, you'd be helping out anyway. So don't make her go
this alone.
Humor helps - I made labels for the bottles: "Made for Colin by Mom with Love,"
"Got Milk?" etc.
Keep in mind that men and women handle the NICU roller coaster differently -
My wife was emotional while I was the rock. At least on the outside. But
it didn't mean I didn't care or that I didn't hurt as they poked and prodded
the 1 lb., 10 oz. bundle known as my day-old son. Just because my wife was
busy dissolving into a puddle of her tears didn't mean she was unable to make
a decision or sign a consent form. These different coping mechanisms can pull
a marriage apart. Recognize them and try to grow closer from them.
Respect how your partner chooses to go through this. She may be quiet, loud, emotional, or distant. Try to get a handle on what she needs you to say and do.
This is not necessarily a problem with a solution, like in math or engineering. Do what your instincts tell you is right, but realize that there may be no one correct answer.
Your feelings of helplessness, frustration and anger may be greater or more obvious than your partner's; she may feel more sorrowful or sad. Talk about how you're feeling.
Seek out other fathers, especially smart ones whose opinions you respect.
Sometimes guy language is also just what you need to hear. When my preemie son
was in the hospital one of my colleagues, who is a grandfather of five, told me, "Boy, you have to steel balls to go through this!" That was good to hear.
Your place in this emergency may, at first, involve as much a financial and insurance obligation as anything else. Give yourself full credit for this. It's important, too.
Ask questions, no matter how stupid, until you get the answers you want,
and then ask some more. (Richard Feymam, Nobel prize winner in Physics)
My experience can be pretty much summed up by a fellow (a doctor) who wanted
to do a CAT scan of my son's head to look for calcium deposits. At first, this
seemed like a reasonable request. However, we followed this up with a few
questions:
"Q: What will it mean if you do find them?
"A: We're not sure, but they seem to be associated with prematurely and IUGR.
"Q: What will you do if you find them?
"A: Well, nothing. There is nothing we can do about them.
"Q: And the CAT scanner will come up to the NICU?
"A: Well, no, we'll have to take your son's incubator down there.
"Q: And he'll stay in the incubator?
"A: Well no, he'll have to come out of the incubator.
"Q: And he'll be in the same CAT scanner as the (sick) adults?
"A: Well, yes he will.
"Q: So let me see if we understand this right. We are going to spend a chunk
of our money to take my son out of his incubator, expose him to cold temperature,
germs, and a certain amount of X-ray radiation - to his head (remember, if my
son were still inside his mom, they would not even allow her a dental X-ray)
-- to do something of absolutely no benefit to him? - NICU dad D.C.
Talk to me
My wife was in the hospital for almost a month prior to our daughter's birth
at 30 weeks. During the stay, it came to my attention that I knew nothing about
what was happening. My wife had a decent amount of knowledge of preemies and
the risks before it was real to us, but I knew nothing. Most of the time I felt
totally ignorant to the situation around me and the more questions my wife
asked, the more out of touch I felt. The doctors always seemed to be talking
to her since she was the one actually carrying the child. I didn't exactly have
an extensive history with infants as it was, much less labor and delivery. To
be thrown into a high-risk delivery and then to see your first child with tubes
in their face, arms, legs, and worst of all, their head. It was terrifying,
and all the while it seemed I still never knew what was going on. I guess that
was the biggest thing for me. My wife was always so confident and any
question I had was met with, 'Don't you remember? The doctor already told us about that.' It
seems as if the haze I was living in was mine alone. Sometimes as men we have
so much less knowledge about infants to begin with. To know what to expect with
a preemie is ten times more difficult. I guess I would say that I needed
someone to talk to me. Not just my wife. - NICU dad Jimmy
A father's story
My Michael was born on 6-10-00 at 525 grams (1 lb. and 2.5 oz.) We had found out
that we were pregnant shortly after Christmas of 99 and were looking forward
to our first child. My wife was very scared and bought and read everything that
she could get her hands on about being a mommy. We had gone for our first
ultra-sound at 20 weeks and were happy to see our child for the first time.
At 27 weeks, we went back for a follow-up exam because they did not find all
four chambers of the heart. Brenda had been suffering from 'Night Panics' and
we thought that a second exam would calm her down. After the ultra-sound we went
back up to see our doctor and he told us, "I am not going to lie to you, things
are not going well." He told us to go to Vanderbilt Medical Center down in
Nashville and that we would see a specialist and they would do some tests.
We got in the car and drove down to Nashville for our tests and didn't think a thing about it. The whole way down all I could think was, 'Great she is probably going to be on bedrest the balance of the pregnancy!'
All afternoon we were bombarded by medical students coming into talk to us and
ask us questions. They would all start at the same place, 'Live Delivery?', and
we would tell them 'No, just tests!' Then after about six hours of tests the
doctor came into the room and told us what was going on. Michael was IUGR, the
fluid around the baby was shrinking, and Michael was slowly dying every day.
They did not tell us how small he would be, the only thing that they would
tell us was 'Small!'
There were a few tests that they would perform to eliminate a few problems, but
if his condition did not improve he would have to come the next day. His odds
were only 30% for making it through the next few days and they could not
guarantee what kind of shape he would be in due to his lungs and the slow
development of his eyes and his brain.
I never cried so hard in my life. I had never hurt so bad in my life. I had
never felt loss so much in my life. I felt like someone had ripped my heart
in half. We cried for an hour and cried until we were numb. We were so shocked
by what we had heard that none of it seemed real. This wasn't real, it couldn't
happen to me. It couldn't happen to my son ... Please make it stop, I can't lose
a son that I haven't even met or held or talked to. This is more than I can stand,
I don't know what I can do. This is not happening to me. That was all I
could think.
The next day we had our contraction test ... There was nothing to do that day
but sit and wait. I made all of the calls to our family and told them what was
going on, I think that was the hardest part. I had to tell them something that
hurt to say, it hurt me to even think that we could lose this baby. The nurses
came and asked me if I would like a tour of the NICU to see what we were in for.
I followed them into the strangest room I had ever seen.
If you have never been
in a NICU, it is not what they show you on TV. There were 24 small beds
surrounded by machines of all kinds. Little babies were hooked up to so many
machines, with so many little tubes and lines and cords. Every time they would
stop and show me a baby I would ask, 'Is he/she smaller than my baby?' And
they would answer, "No, your baby will be smaller than that." I could not
figure how my son could be any smaller than the babies in that room.
At eight o'clock that night we started the test. I fell asleep in a chair and
was woken by a nurse who handed me a white suit and said only, 'It is time.'
I do not remember putting on my suit or my booties or my mask. I walked down to
the delivery room with my wife and they asked me to stand in the hall. I
thought that I was going to throw up or pass out or just plain lose it.
They prepped my wife and then told me that I could come in. She was covered
to her neck and there was a small metal stool that was right beside her. I
sat on my stool, held her hand and watched her face. The doctor started and
my wife started screaming and crying. She had an epidural but the pressure
and the pulling scared her badly. She looked horrible and she scared me so
badly, I thought that she was dying.
My son was delivered and they told us that he looked well. We didn't hear him
cry ... They put my son in an isolette and wrapped him in blankets. They
travelled past us and stopped. I looked over at the small plexiglass box on
wheels and saw my son for the first time.
He was small, so very small. His
head was smaller than a tennis ball. He was wiggling around, basically from
shock. He was scary small, nothing that small could make it by itself. I
shouldn't have looked, the image of that small little head and the way he
shook from being in an environment that he was not ready to enter gave me
nightmares for weeks. I don't think I slept at all that night.
My wife could not see him and they would not let her touch him. I turned back
to her and started to cry, we had a son that was not going to make it. The only
thing that I could tell her was, "He is just too small." - NICU dad Norman
Thankyou to the fathers who shared their stories with me.
