During my pregnancy with Hayden
At 20 weeks, I went for my ultrasound to check and see how
Hayden was growing. The following day I
received a phone call from my OBGYN’s office telling me that the doctor had
noticed on the ultrasound that Hayden’s right arm was measuring shorter than it
should be and that I needed to go have a more detailed ultrasound done to be
sure. So, I scheduled the appointment
and then waited. That’s all we could do.
A little over a week later, Zac and I went for the
ultrasound. Once the doctor finally came
in the room she asked us, “So, do you know why you are here?” We told her that it was because Hayden’s arm
was shorter that it was supposed to be.
She said, “No, it’s his left leg that we are concerned with.” We sat there in disbelief. We had been trying to prepare ourselves for
this and then we find out what we were told was incorrect. It was his leg, not
his arm? So, she went ahead with the
ultrasound. Most of the time, she was
quiet. She didn’t say much. The entire time I laid there crying. Finally, after what seemed like forever, she
told me to go ahead and sit up. She then
told us that Hayden’s left leg was significantly shorter than the right and that I would need to go have a fetal MRI done at Nationwide Children’s Hospital
for confirmation. She also told me that I would need to come in every 2-3 weeks for an ultrasound to
track the growth of his leg. We were both a wreck; you have so many different
emotions come over you and neither of us were sure what to think.
After waiting another 2 weeks I went in for the fetal
MRI. This ended up being totally
different than I could have ever imagined.
Being put into a machine on my back at 6 months pregnant and then told
to hold my breath for extended periods of time was not my idea of a good
time. Around a week later, we had the
results. They confirmed that Hayden’s
left leg was shortened. They said that
they believed he had PFFD.
For the rest of my pregnancy, I continued to go have
ultrasounds to track the growth of Hayden’s leg. I’d say I ended up having at least 6-8
ultrasounds during the last half of my pregnancy. We tried to prepare ourselves for what we
were going to have to deal with and what Hayden was going to have to go
through. It was overwhelming to say the
least.
Hayden was born
On 7-21-10, my due date came and still no Hayden. I went for an exam and my OBGYN asked me if I
wanted to wait another week or be induced.
I decided to wait another week and let him come when he wanted to. Later that same day, my OBGYN called me. She said that she had remembered that my
daughter, Lilly, had a hard time coming out (her shoulder had gotten stuck).
She decided that since Hayden was bigger
than Lilly, I shouldn’t wait another week.
She suggested a C-section that following morning.
The next morning Hayden was born via C-section. He weighed 8lbs 8oz and was 21.5 inches
long. As I was being closed up, Zac went
to check on him and see how he was. He
came back over and told me that he looked great and that his leg didn’t really
look all that bad. About 5 minutes later
a nurse came over with Hayden. She
said, “So you knew about his leg, correct?”
We both shook our head. She then
said, “Well, what about this?” and shoved his right arm in our faces. I lost it.
I was lying there with my insides hanging out and this lady had the
nerve to bring my son over and shove his arm in my face and ask me that
question with no compassion. I couldn’t
believe it. After all of the ultrasounds
and the fetal MRI, how did they NOT see his arm? We had originally been told it was his right
arm, and then told no, it’s his left leg.
I had to get over being mad fast.
At that point, it wasn’t going to change anything.
After I got out of recovery I went to the special care
nursery to see Hayden. To say he was
beautiful would be an understatement.
They started running all sorts of tests, to make sure that there weren’t
any underlying issues, or anything genetic.
He stayed in the special care nursery at Mount Carmel West for 4 days
before being transferred to the NICU at Nationwide Children’s Hospital to
undergo more testing. We were there for
2 days before they finally let us come home.
All of the tests came back normal.
Hayden was diagnosed with PFFD (Proximal Femoral Focal Deficiency) of
the left leg and Ulnar Dysplasia (also referred to as Ulnar Club hand) of the
right arm/hand.
After coming home
A few months later, we started visits to Nationwide
Children’s Orthopedics. We saw a surgeon
for Hayden’s hand and also a surgeon for his leg. The doctor that was seeing us for Hayden’s
arm/hand told us that he would be able to separate Hayden’s 2 fingers and lengthen
his arm, but he would have to fuse the elbow joint. We told the doctor we would have to think
about it. We continued to see another doctor
for Hayden’s leg. We had been under the
impression the whole time that lengthening his leg would not be an issue. At around his 9 month appointment, he had an
x-ray. She told us that she couldn’t see
the ball of Hayden’s hip in the x-ray and that there wasn’t anything else that
she could do. We of course asked her
what our options were. Amputation was
implied, or doing nothing. Then she
said, “Or you can go to West Palm Beach.
There is a doctor there that specializes in this type of thing. His methods are considered radical, but it’s
up to you.” We made the appointment
and planned our trip to Florida.
Dr Paley
We had our appointment with Dr. Paley on June 17th, 2011. Hayden had x-rays of his leg/hip and
arm/hand, and then we were placed in a room to wait. I had met a family at our hotel the night
before who told me to expect to be waiting all day, they were
right. We waited 7 hours to see Dr.
Paley, but it was worth the wait. I was impressed with Dr. Paley and his
staff. They took the time to make you
feel like your child was important to them and that he would be provided the best
care possible.
When Dr. Paley came into the room he looked at the x-rays and
told us that he would be able to separate Hayden’s fingers and rotate one of
them to make a thumb and also lengthen his arm.
He said that he would NOT have to fuse the elbow joint, like we had been
told. He couldn’t believe we had been
told that. The arm lengthening/finger separation will require that we stay in Florida
for 4-6 weeks.
He also explained that
he could see the ball of Hayden’s hip in the x-ray. Hayden will need what is called a “Super-hip”
procedure, at around 2 years old, which will require us to stay in Florida for
2 weeks. The leg lengthening is going to
be the hardest part. It will require us
to stay in Florida for 4 months at a time.
The lengthening of his leg will begin around the age of 4 and he will
need 3-5 lengthening procedures between then and age 18.
I felt like I had a ton of bricks lifted off
my chest. We finally had more answers
than questions. It is no longer a
matter of “Who is going to do these surgeries?” or “Is there anything that can
be done?” It is now, “We have to make
this work.” Going to Dr. Paley isn’t an
option, it’s necessary for Hayden.
In the meantime
Hayden was fitted with an AFO brace and a shoe lift in July
2011. Unfortunately, after months of
Physical Therapy we weren’t getting anywhere.
He did not like the lift/brace that he was given.
I decided to switch to Hanger Orthopedics in February 2012. Hayden was given a new AFO brace and shoe lift.
He continues to have PT, but he still does not want to walk with his
brace/lift. We have been more focused on
his balance and the texture sensitivity issues he seems to have, for the time
being. His PT, Teri, is fabulous. She
believes that he isn’t feeling stable when standing in the lift because of his
hip (you can hear it pop and it gives
out sometimes). We believe that once he has the hip procedure, he will
hopefully be able to start using the lift to walk. I have also partnered with Help Me Grow, to work on
his speech. It had been delayed, but
just in the last few months he has went from barely communicating (grunting
and pointing) to clearly communicating what he wants.
Hayden does everything that any other 2 year old does, for
the most part. He’s up and down the
stairs, all over the furniture, feeds himself, makes messes, gets into
everything and has discovered a way to walk.
It’s a modified type of walking, where he is standing on his shorter leg
(foot on ground) and is on his knee with the longer leg.
Upcoming Surgery
Hayden has an MRI scheduled in FL on April 17, 2013 to
determine what type of “Super-Hip” procedure he will require. The following week, on April 25, 2013 Hayden
is scheduled to undergo the arm lengthening surgery and the finger
separation.
As mentioned before, this
will require us to stay in FL for 4-6 weeks.
The plan is to have the arm/hand surgery done and then once he is healed
we will have the hip surgery done, which would add an additional 2 weeks to our stay. That
way we will be able to get 2 surgeries done in one trip.
We are planning on staying in FL for around 8
weeks. We are hoping to put together a
couple of benefits/fundraisers in the coming months to help us with the
expenses related to this trip (lodging, gas, food, medical bills), since we
will still have to keep up with our normal bills here at home. Unfortunately, Dr. Paley will not be
in-network with Zac’s insurance through Ohio State, so our out of pocket cost
will be $6,000 (max). We figure that
this trip alone will cost us anywhere from $10,000-$12,000. We know that this will be worth it. Making sure that Hayden has the best chance
of having a normal life IS worth every sacrifice. I will continue to post updates and Hayden’s
progress over the coming months.
