To tell, or not to tell, that is the question.
You just found out your baby has clubfoot - or - you just found out via
ultrasound that your baby will be born with clubfoot. Either way, the
question remains....to tell or not to tell your family and friends about the
clubfoot diagnosis, and if so, uh...... how? When? Who?
I'm in the camp that says you should tell. Why? Because it's a burden
to keep a secret. I subscribe to this line of thought on almost every
issue, actually. Secrets are a burden, and there is a wonderful sense of
liberation when you cast them off and allow others to help carry part of
that load not for you, but with you.
Also, if you choose to use the Ponseti Method of clubfoot correction -
there really isn't anything to hide anyway. This method of treatment is
quick, painless, and has a proven 95+% success rate. There really is no
gloom and doom unless you want to just make it that way.
When Brian was born, we did not know he would be born with clubfoot. It
was a surprise at birth. And at birth, I was neither shocked, nor alarmed,
nor ashamed, nor afraid. I was none of those things... UNTIL... the
midwife said to me, "Be glad it wasn't his head." She implied heavily that it
was my fault he had this birth defect.
Now let me say that prior to switching from a full blown OBGYN to a
midwife, I had received superior prenatal care through one of the best
hospitals available with in a day's driving distance. They had done their
prenatal work on me, including an ultrasound. I was healthy as a horse; I
had done everything "right". But the full spectrum OBGYN route was not
for me, that part of my pregnancy did not feel right to me. I was totally out
of control with strangers pushing me through a chute like a head of cattle
and that didn't fly with me - and thus, I switched to this midwife where my
pregnancy was mine alone and I was in control of my pregnancy and
delivery.
And it all went very well until that moment when she implied I had caused
my own child to be grotesquely deformed.
I had gone in to labor on a Wednesday. It continued through Thursday.
On Friday the labor got serious. We went out to the steak-house for
dinner and I age like a regular little pigglett in between contractions that
were strong enough by now to get my attention. Went home that night
and the contractions intensified until around 2 a/m we drove to the birthing
center.
Now this midwife had described labor to me - she said if a woman could
still carry on a conversation she wasn't in labor. She didn't know me!
ha! I was a regular two minutes apart so we went and I arrived in her
parking lot with her waiting for me outside, and I was laughing. Oh sure,
hurt like hell, because labor does - but I was still laughing at some stupid
joke. So we go in and spend the night fighting with a child who had
decided to be born sunny side up and not by his own accord either. We
fought for every scrap of an inch he would descend in to the world until
twelve hours later he made is appearance after thirty-some hours of
active labor.
I was just glad to have the little feller born - his feet were the least of my
worries and I said as much, I said, "I've seen lots of animals born this way,
he'll be OK." Evidently though this midwife over in Fort Smith Arkansas
had words with my then-now-ex husband about it, about it being my fault
and all this other horse hockie so that when we drove home two hours
after I'd given birth he starts to relay this information to me.
Holy cow bat man. You mean this was my fault?
I didn't know how it could be but suddenly I was very much responsible for
breaking my own child who was only hours old.
For three days I hid in a funk. We told family that he was born, but we
didn't tell them that we'd totally phucked up and caused some terrible birth
defect. For three days I kept him hidden not only from the world, but from
myself as well.
I had good neighbors in those days and they came in droves to see me
and my new baby. I wrapped him up thoroughly so nobody would chance
to see, or even feel, his deformed feet through all the padding. If they
didn't know, then they wouldn't know my shame.
This all hit me like a ton of bricks because you'll think I'm crazy but I knew
my baby would have a birth defect. I knew because several years prior to
his birth I had a husband who left me due to my lack of conceiving a child.
Why I had infertility problems is God's own mystery - but the man left me
for it and I was living alone, living a way out in the back woods of eastern
Oklahoma, working nights because i was afraid of being home alone at
night. So I was driving home from work one night in the wee hours of the
morning, still dark out and a huge full moon was shining low ahead of me. I
was feeling bummed. Bummed about the divorce, bummed about living
alone, bummed about not having a baby of my own and I pulled off on to
that dirt road to go home that night and that big moon was right there in
front of me and I was thinking about all this when I heard a voice.
Now you might think God talks in some booming voice but he doesn't,
least not to me and I've heard him on more than one occasion I assure
you. On this night He said to me, "It's OK." and then He let me know in his
own Godly way of putting thoughts in your head that I would have a child:
a son, with a birth defect.
I was OK with the idea. In fact, i was relieved. A serenity came upon me
and I didn't worry about infertility anymore.
Year passed and just like He'd told me, I had a son, and that son had a
birth defect and I wasn't the least bit worried until that midwife told me I
needed to be worried than it hit me hard and I hid both my shame and my
baby from the world.
Silly me. God had done told me it would be OK, why didn't I listen?
It was on the 4th night that sobriety hit me - God doesn't make junk. I ran
up to the store and bought an ink pad and I made my boy's foot prints and
I hung them on the wall, clubbed and all. The next day Dr. Buie there in
Fort Smith began to treat his clubfoot with casts that would last another six
miserable months and beyond. Just a side note for anyone in western
Arkansas or eastern Oklahoma, I don't recommend our friend Dr. Buie for
clubfoot treatment at all. Like a lot of parents, back then I just went to the
doctor some other doctor told me to go to with no questions asked.
Mom and I were estranged back then but I did tell her I'd had a baby, and I
eventually told her he had clubfoot. Know what she said? Something like
"Oh that's OK." I had to tell my neighbor friends too cuz you can't keep
your baby's deformity a secret forever. Know what they said? "Oh that's
OK."
And slowly I began to realize they were right. He was OK. I was OK. He
was still a darling baby and the whole world loved him!
My then-but-now-ex-husband didn't take it so well though. He remained
ashamed and embarrassed to the point that he separated himself from
the child in all ways possible until our divorce two years later in the middle
of Brian's eventual ATTT surgery. Evidently his mother had a phrase as
he grew up she used for stupid bone headed people. She would say,
"That stupid clubfooted jerk!" My then-husband never got past that.
His mother did - she adored the boy clubfeet and all. But some folks just
can't let go of the baggage and he was one of them.
A few years passed with Brian and I on our own till I met a man and
wouldn't you know it? He had a clubfooted brother, and a clubfooted
nephew. Together with my clubfooted son and I married him and
wouldn't you know it? We had ourselves not one more clubfooted boy,
but two more!
Silly me again! I must have misunderstood God talking to me that night
on the dirt road long ago, he didn't say "Son" He had said "Sons!" (Plural!)
Now with Everett, my second born son, I told my Mother right away and
she was bummed but optimistic because we had already found out about
Dr. Ponseti. It was a while before my husband even told his mother I was
pregnant - that's another story for another time - but when he told her,
she was really bummed because her son Mark and her grandson Greg
both had clubfoot that remained terribly deformed thanks to terrible
(traditional) treatment.
She and my husband trusted me though when I told them about the
Ponseti Method - they flew on faith and when little Ev made his debut on
the world stage that night parked along the highway in the dark, I felt him
out in the dark - yup, two hands, ten fingers, he's a boy, and yep, there's
the teeny tiny clubbed feet. We drove on to the hospital, and I'm still not
entirely sure why, but we did and it was a hoot because Chriss drove up t
the ER door and I was sitting there with no pants on holding my new born
baby wrapped in a towel that was in the truck. He went in to tell the staff
his wife had a baby in the truck.
No one believed him. He said it again and about a dozen people came
out to look at me. I held Everett up and laughed at all of them staring at
me. Then the dozen people ran back in and returned with a gurney, all
twelve of them still gawking at me.
I said, "No he won't, we intend to use the Ponseti Method, we've already
made arrangements."
"He will need surgery, we should begin to cast him right away." The doctor
replied. Try as I might I could not convince him there was a better
alternative, so when it came down to it and he insisted on casting, I just
told him, "No thank you, we will take care of it ourselves."
We went to Iowa City where Dr. Ponseti fixed Everett's feet in three
weeks. At first my mother in law kept saying "Oh that poor baby!" but
soon enough she was singing a different tune.
When I was pregnant with Garrison I didn't dream God had enough humor
to curse me a third time - but alas, for whatever reason, He did. On the
first ultrasound it was barely visible and I thought, "NO! It's not there!" I
held on to my belief the feet were fine until the 2nd ultrasound and still I
didn't want to see them but there they were and when the doctor in all his
skill pointed them out, what did I do?
I cried.
I turned my face from that screen and I wept like a baby and I got outside
and wept to the car and I wept on the way home. I just wanted once to
have a "normal" baby - one normal baby, was that asking too much?
Well, you know the definition of Normal: what is regular for you despite it
being regular for others or not. Clubfoot was my normal and my third
baby was going to be just as "normal" as could be!
Our mothers waited nervously and eagerly for us to get home with the
news. We told them both right away - and everyone else because I guess
when you already have two clubfooted sons folks are kind of curious
about if you can pull it off for a third time in a row.
We could.
And not keeping it a secret was a huge weight lifted from our shoulders.
When folks bought us gifts and baby cloths or whatever, they kept in mind
we'd have a few special considerations.
A group of ladies I adore and admire and respect to no end came
together with donations and sent me (gasp!) a check for several hundred
dollars to help offset the cost of treatment yet again. I was dumbfounded.
I think being the parent of a child born with clubfoot or any other deformity
is a blessing - and an honor. Took me a while to figure that out but it
came to me eventually.... These kids need parents who will provide and
make all those hard decisions for them.
I've said it before on this site and I'll say it again, it takes a village to raise
a child. Rely on your village, seek the support, strength and love they
have to offer, honor them by allowing them to help.
You just found out your baby has clubfoot - or - you just found out via
ultrasound that your baby will be born with clubfoot. Either way, the
question remains....to tell or not to tell your family and friends about the
clubfoot diagnosis, and if so, uh...... how? When? Who?
I'm in the camp that says you should tell. Why? Because it's a burden
to keep a secret. I subscribe to this line of thought on almost every
issue, actually. Secrets are a burden, and there is a wonderful sense of
liberation when you cast them off and allow others to help carry part of
that load not for you, but with you.
Also, if you choose to use the Ponseti Method of clubfoot correction -
there really isn't anything to hide anyway. This method of treatment is
quick, painless, and has a proven 95+% success rate. There really is no
gloom and doom unless you want to just make it that way.
When Brian was born, we did not know he would be born with clubfoot. It
was a surprise at birth. And at birth, I was neither shocked, nor alarmed,
nor ashamed, nor afraid. I was none of those things... UNTIL... the
midwife said to me, "Be glad it wasn't his head." She implied heavily that it
was my fault he had this birth defect.
Now let me say that prior to switching from a full blown OBGYN to a
midwife, I had received superior prenatal care through one of the best
hospitals available with in a day's driving distance. They had done their
prenatal work on me, including an ultrasound. I was healthy as a horse; I
had done everything "right". But the full spectrum OBGYN route was not
for me, that part of my pregnancy did not feel right to me. I was totally out
of control with strangers pushing me through a chute like a head of cattle
and that didn't fly with me - and thus, I switched to this midwife where my
pregnancy was mine alone and I was in control of my pregnancy and
delivery.
And it all went very well until that moment when she implied I had caused
my own child to be grotesquely deformed.
I had gone in to labor on a Wednesday. It continued through Thursday.
On Friday the labor got serious. We went out to the steak-house for
dinner and I age like a regular little pigglett in between contractions that
were strong enough by now to get my attention. Went home that night
and the contractions intensified until around 2 a/m we drove to the birthing
center.
Now this midwife had described labor to me - she said if a woman could
still carry on a conversation she wasn't in labor. She didn't know me!
ha! I was a regular two minutes apart so we went and I arrived in her
parking lot with her waiting for me outside, and I was laughing. Oh sure,
hurt like hell, because labor does - but I was still laughing at some stupid
joke. So we go in and spend the night fighting with a child who had
decided to be born sunny side up and not by his own accord either. We
fought for every scrap of an inch he would descend in to the world until
twelve hours later he made is appearance after thirty-some hours of
active labor.
I was just glad to have the little feller born - his feet were the least of my
worries and I said as much, I said, "I've seen lots of animals born this way,
he'll be OK." Evidently though this midwife over in Fort Smith Arkansas
had words with my then-now-ex husband about it, about it being my fault
and all this other horse hockie so that when we drove home two hours
after I'd given birth he starts to relay this information to me.
Holy cow bat man. You mean this was my fault?
I didn't know how it could be but suddenly I was very much responsible for
breaking my own child who was only hours old.
For three days I hid in a funk. We told family that he was born, but we
didn't tell them that we'd totally phucked up and caused some terrible birth
defect. For three days I kept him hidden not only from the world, but from
myself as well.
I had good neighbors in those days and they came in droves to see me
and my new baby. I wrapped him up thoroughly so nobody would chance
to see, or even feel, his deformed feet through all the padding. If they
didn't know, then they wouldn't know my shame.
- I want it clear that I wasn't ashamed of my
child for being deformed, I was ashamed of
myself for causing it.
This all hit me like a ton of bricks because you'll think I'm crazy but I knew
my baby would have a birth defect. I knew because several years prior to
his birth I had a husband who left me due to my lack of conceiving a child.
Why I had infertility problems is God's own mystery - but the man left me
for it and I was living alone, living a way out in the back woods of eastern
Oklahoma, working nights because i was afraid of being home alone at
night. So I was driving home from work one night in the wee hours of the
morning, still dark out and a huge full moon was shining low ahead of me. I
was feeling bummed. Bummed about the divorce, bummed about living
alone, bummed about not having a baby of my own and I pulled off on to
that dirt road to go home that night and that big moon was right there in
front of me and I was thinking about all this when I heard a voice.
Now you might think God talks in some booming voice but he doesn't,
least not to me and I've heard him on more than one occasion I assure
you. On this night He said to me, "It's OK." and then He let me know in his
own Godly way of putting thoughts in your head that I would have a child:
a son, with a birth defect.
I was OK with the idea. In fact, i was relieved. A serenity came upon me
and I didn't worry about infertility anymore.
Year passed and just like He'd told me, I had a son, and that son had a
birth defect and I wasn't the least bit worried until that midwife told me I
needed to be worried than it hit me hard and I hid both my shame and my
baby from the world.
Silly me. God had done told me it would be OK, why didn't I listen?
It was on the 4th night that sobriety hit me - God doesn't make junk. I ran
up to the store and bought an ink pad and I made my boy's foot prints and
I hung them on the wall, clubbed and all. The next day Dr. Buie there in
Fort Smith began to treat his clubfoot with casts that would last another six
miserable months and beyond. Just a side note for anyone in western
Arkansas or eastern Oklahoma, I don't recommend our friend Dr. Buie for
clubfoot treatment at all. Like a lot of parents, back then I just went to the
doctor some other doctor told me to go to with no questions asked.
Mom and I were estranged back then but I did tell her I'd had a baby, and I
eventually told her he had clubfoot. Know what she said? Something like
"Oh that's OK." I had to tell my neighbor friends too cuz you can't keep
your baby's deformity a secret forever. Know what they said? "Oh that's
OK."
And slowly I began to realize they were right. He was OK. I was OK. He
was still a darling baby and the whole world loved him!
My then-but-now-ex-husband didn't take it so well though. He remained
ashamed and embarrassed to the point that he separated himself from
the child in all ways possible until our divorce two years later in the middle
of Brian's eventual ATTT surgery. Evidently his mother had a phrase as
he grew up she used for stupid bone headed people. She would say,
"That stupid clubfooted jerk!" My then-husband never got past that.
His mother did - she adored the boy clubfeet and all. But some folks just
can't let go of the baggage and he was one of them.
A few years passed with Brian and I on our own till I met a man and
wouldn't you know it? He had a clubfooted brother, and a clubfooted
nephew. Together with my clubfooted son and I married him and
wouldn't you know it? We had ourselves not one more clubfooted boy,
but two more!
Silly me again! I must have misunderstood God talking to me that night
on the dirt road long ago, he didn't say "Son" He had said "Sons!" (Plural!)
Now with Everett, my second born son, I told my Mother right away and
she was bummed but optimistic because we had already found out about
Dr. Ponseti. It was a while before my husband even told his mother I was
pregnant - that's another story for another time - but when he told her,
she was really bummed because her son Mark and her grandson Greg
both had clubfoot that remained terribly deformed thanks to terrible
(traditional) treatment.
She and my husband trusted me though when I told them about the
Ponseti Method - they flew on faith and when little Ev made his debut on
the world stage that night parked along the highway in the dark, I felt him
out in the dark - yup, two hands, ten fingers, he's a boy, and yep, there's
the teeny tiny clubbed feet. We drove on to the hospital, and I'm still not
entirely sure why, but we did and it was a hoot because Chriss drove up t
the ER door and I was sitting there with no pants on holding my new born
baby wrapped in a towel that was in the truck. He went in to tell the staff
his wife had a baby in the truck.
No one believed him. He said it again and about a dozen people came
out to look at me. I held Everett up and laughed at all of them staring at
me. Then the dozen people ran back in and returned with a gurney, all
twelve of them still gawking at me.
- The next day a doctor came to see me, to
break the bad news. My son had clubfeet (Duh!) and he
would need extensive castings and surgeries over his childhood
years to correct them.
I said, "No he won't, we intend to use the Ponseti Method, we've already
made arrangements."
"He will need surgery, we should begin to cast him right away." The doctor
replied. Try as I might I could not convince him there was a better
alternative, so when it came down to it and he insisted on casting, I just
told him, "No thank you, we will take care of it ourselves."
We went to Iowa City where Dr. Ponseti fixed Everett's feet in three
weeks. At first my mother in law kept saying "Oh that poor baby!" but
soon enough she was singing a different tune.
When I was pregnant with Garrison I didn't dream God had enough humor
to curse me a third time - but alas, for whatever reason, He did. On the
first ultrasound it was barely visible and I thought, "NO! It's not there!" I
held on to my belief the feet were fine until the 2nd ultrasound and still I
didn't want to see them but there they were and when the doctor in all his
skill pointed them out, what did I do?
I cried.
I turned my face from that screen and I wept like a baby and I got outside
and wept to the car and I wept on the way home. I just wanted once to
have a "normal" baby - one normal baby, was that asking too much?
Well, you know the definition of Normal: what is regular for you despite it
being regular for others or not. Clubfoot was my normal and my third
baby was going to be just as "normal" as could be!
Our mothers waited nervously and eagerly for us to get home with the
news. We told them both right away - and everyone else because I guess
when you already have two clubfooted sons folks are kind of curious
about if you can pull it off for a third time in a row.
We could.
And not keeping it a secret was a huge weight lifted from our shoulders.
When folks bought us gifts and baby cloths or whatever, they kept in mind
we'd have a few special considerations.
A group of ladies I adore and admire and respect to no end came
together with donations and sent me (gasp!) a check for several hundred
dollars to help offset the cost of treatment yet again. I was dumbfounded.
- When it comes down to tell or not to tell
about your clubfoot diagnosis- the answer it
easy: Tell. Split the load with those around
you who truly care. If you are worried how
they will react then you have to think like
this:
If they are your friends, they will support
you with love.
If they are not your friends, then don't waste
your time on them, they really wouldn't care
either way.
I think being the parent of a child born with clubfoot or any other deformity
is a blessing - and an honor. Took me a while to figure that out but it
came to me eventually.... These kids need parents who will provide and
make all those hard decisions for them.
I've said it before on this site and I'll say it again, it takes a village to raise
a child. Rely on your village, seek the support, strength and love they
have to offer, honor them by allowing them to help.
- Children with disabilities or deformities are
wonderful teachers. Watch them and learn
from them. Don't hide them from the world
and do not be ashamed for this is your
opportunity to not only learn, but to reach
out to others around you in positive ways.
| To Tell. Or Not To Tell Making that very personal decision. |
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Return to Top of Page, or Read More
about Various Aspects of Life With
Clubfoot at One of the Links Below.
about Various Aspects of Life With
Clubfoot at One of the Links Below.
