Every parent , I think, is thrilled with the miracle of a new life coming
into their lives. And it never occurs to us that our baby will be anything
less than perfect. So it was quite a shock when I was told at our 7 month
check up that my baby would be born with a short femur. Actually that seemed
like almost a relief, though, considering I had already gone into labor and
we were trying desperately to keep him in the womb as long as possible. After
the initial shock wave of finding out that he had an orthopedic problem,
I thanked God that it wasn't life threatening and was something that could
be fixed. I always believed that Adam's leg problem could be fixed.
Then, of course, after Adam was safely here and we started seeing our first
orthopedist, we got the same news that so many parents with PFFD kids hear:
amputation is the standard way to "fix" it. I was stunned. Somehow the logic
escaped me: If it's too short, cut it off? No, surely that couldn't be right.
We had some more tests, an arthrogram and others, and then we just sort of
didn't go back to that doctor.
When Adam was two, we found another doctor, one with the University of Kansas.
I knew they had an excellent reputation, and I felt confident that these
doctors would tell us the "right" way to fix Adam's leg. Wrong. We heard
the terms "Van Ness Rotation" and "Syme Amputation". Then I didn't hear much
else. I just waited until the doctor quit speaking and quickly left the building,
quite sure we would never return.
In the meantime, my marriage failed. There were many reasons. The PFFD wasn't
the reason. But being a single mom has made some of dealing with Adam's PFFD
easier, and some of it harder.
One of the first things I did as a single mom was to seek care for Adam from
the Shriners. My ex-husband had always had something against them, and now
I was free to go get their opinion. They do so much good for so many kids,
and I was sure that their team of experts would be able to fix Adam's leg.
But without even seeing him, they automatically assigned us to the Amputee
Clinic. On our first visit I heard those same awful words again and Adam
was fitted for his artificial leg. They didn't even ask me if this is something
I would agree to; they just assumed I would go along with it.
Several months before seeing the Shriners I had been in a laundromat and
sat down at a table while I was waiting for my laundry. On the table a magazine,
People Magazine, was open to an article about this doctor in Baltimore who
was doing amazing things in the area of limb lengthening and reconstruction.
It was interesting, and something told me then that I should clip out the
article and keep it. I did, but I was so focused on the Shriners being our
answer, that I didn't think anymore about that article. I saved it, though,
and after the devastating news from the Shriners, I was glad I did. When
we got home from Minneapolis, I immediately called Baltimore to find out
more. Fifteen minutes later we had made arrangements to fly east to see Dr.
Dror Paley at the Maryland Center for Limb Lengthening and Reconstruction.
Our visit with Dr. Paley went well. He said that Adam had many problems.
It was more than just a short leg. He had a deformed knee and hip, and several
operations would be needed over a long period of time. That was the bad news.
The good news was that he felt confident that he could help us. As I said
before, I had always believed that Adam's leg could be fixed. And now I had
found someone willing to try.
When we returned to the midwest after our evaluation with Dr. Paley, we told
our Shriners sponsor that we appreciated all he had done for us, but that
I had decided that we were going to try Dr. Paley. Bob, our Shriners sponsor,
read Dr. Paley's report and was astounded that the Shriners couldn't do all
of that. He asked us if we would do him a favor and go back to Minneapolis,
this time to speak with the Director of the Limb Lengthening clinic at the
Shriners to see why they couldn't do what Dr. Paley proposed. Of course,
I agreed. Bob had done so much to help us and I was happy to go with him
to do this.
Our final visit to the Shriners was a challenge. The head of the Limb Lengthening
Clinic was adamant that what Dr. Paley proposed simply could not be done.
Period. He said that he was a friend of Dr. Paley's and liked him, but knew
him well enough to know that he was simply a dreamer. He would mean well
and want to help Adam, but the bottom line is that Dr. Dror Paley would cripple
my son.
My reaction was that first, Dr. Paley needs better friends, and second, even
if he is a dreamer, at least he and I have the same dream for Adam. I immediately
proceeded with plans to move to Baltimore.
Getting to Baltimore took over a year and was an effort that was full of
many challenges and hurdles to overcome. But we made it. We arrived here
Mother's Day in 1996. Three months later our Medicaid was approved (I don't
have insurance). And in October of 1996 Adam had his first surgery. Dr. Paley
took Adam's knee completely apart and put it back together again. And for
the first time in his life Adam's knee works as well as if it had been born
perfect. And this past winter was the first one in his life where he hasn't
suffered from terrible pain when it's cold and damp outside. In April of
1997 Adam had his second surgery, this time to straighten his femur so it
will fit right into his knee and hip joints. And in October Dr. Paley will
reconstruct Adam's hip socket. Then the lengthenings will start.
I will tell you that none of this has been easy. With the surgery in April
Adam had to have an Ilizarov device on his leg. I won't kid you...it hurts
and the pin care is awful for him ... and for me. And physical therapy is
time-consuming and difficult. And the worst is yet to come for us. And, though,
we know that the best is yet to come too. We know that Dr. Paley is our answer
to prayer. Adam may not end up perfectly even, but we know our Dr. Paley
is a miracle-worker and that everything we go through here will be 1000%
worth it when it's over.
After the April surgery, I asked Adam if he was still willing to go through
with the other surgeries, and his response was "sure Mom, we can't stop now!"
And when I remind him of what we have yet to face, he says, "Whatever it
takes Mom!" When it hurts, he never hollers, and he works night and day on
his therapy. And when I get tired, he's the one to remind me that when it's
over, his leg will be long and strong, and it will be his, not an artificial
one. Oh, and by the way, Adam is only a wise old man of 7 years old.
I know that sometimes amputation is the only answer....or at least the only
answer that some parents are made aware of. And I would never want to criticize
any parent who has had to make that agonizing decision. I commend each of
them for the strength they had to have to get through it all. Some parents
even come to see Dr. Paley and then still decide that amputation is the right
answer for them. And my point in all of this is that there are sometimes
in life several "right" answers. But I encourage each of you to have the
courage and persistence to seek out your BEST right answer and the
commitment to follow wherever that answer leads you. Then, whatever that
answer is for you, and only then will you have peace.
I am most happy to corresponde with any of you. Please feel free to contact
me at : inch-by-inch@juno.com
(Melissa Arnold).
Peace to all of you!
Notes from the PFFDvsg Webmaster:
To follow Adam's progress, read
[[Inch-by-Inch: A Journey Down the Lengthening Road]]
For more thoughts and comments from Melissa, see
[[Puddles of Tears]] on the Virtual Support Group page.