Hayden's Story: October 2012

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 17^th,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.

Thursday, October 25, 2012

Monday, October 22, 2012

Hayden going up the stairs

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