As I think back to the day I found out that I was pregnant with Caleb, I honestly can't remember a happier day. I remember beaming in my kitchen as I read the POSITIVE pregnancy test. I already had another child, my first little boy and partner in crime, Zackery Robert, who at the time was six years old. I still smile as I remember how that year on Zackery's sixth birthday he made a wish for a baby brother as he blew out his birthday candles. Not very long after his birthday......Voilà! A new baby was on the way! We always told Zackery that Caleb was his special baby. And he believed it, too. His wish came true and he told everyone that he was responsible for the baby on the way. He was so ready to be a big brother and I was so ready to hold a baby again.
Between the 7th and 8th week of pregnancy I was involved in two car accidents, one being somewhat minor, while the other accident my car was completely totaled after someone slammed into the back of my car on a rainy day. This accident left me with severe whiplash and I was stuck in bed for almost a week. Other than the whiplash, I felt that I was okay, and the pregnancy seemed to be progressing normal.
At around 18 weeks pregnant I was sent to a perinatologist for an ultrasound, something that was routine for my Ob-Gyn, and at first glance the technician was able to tell that we were having a boy! We were ecstatic! I stared at the ultrasound screen in amazement as they measured the babies head, checked his heart and organs, and measured his bones. I was in heaven watching the the baby move around and I was completely oblivious to the fact that the technician was picking up on something abnormal. We eventually saw the signs on her face that something wasn't right and we were told that we needed to speak with the doctor. Anyone who has ever gone through an incident like this knows that this is the most heart shattering experience a parent can go through. As my husband and I sat in the doctors office waiting for her to give us the results, a million thoughts were going through our heads. We had no idea of what to expect.
This was the day we found out there was something wrong with our baby's leg. The doctor had no idea what the deformity was but she suspected club foot. She assured us that it was common and very easy to fix through casting. As we dried our tears we focused on the fact that the baby was still very healthy and began planning for the baby.
The first time I ever heard the word fibular hemimelia was in the hospital after my son was born. As his defect was very noticeable, they took him for x-rays to discover that he was born completely missing his fibula bone. We were given numbers for specialists in the area and within a week we were scheduled with an orthopedic surgeon in our area to have a look at our precious baby's leg and foot.
*As far as the two car accidents I was involved in, every doctor I have spoken to has reassured me that this was most likely not the cause of Caleb's deformity although I have always had my doubts. It was during Caleb's critical period of development that they occurred, so the timing seems more than a coincidence although I will never know.
Caleb was a perfect baby from head to toe, every inch of him. The first ortho that we went to looked at Caleb's foot, took some x-rays, and told us that we were probably going to have to amputate his leg. I was hysterical! As I looked down at my baby, all I saw was the most perfect little leg, a little crooked perhaps and maybe a little shorter than the other one, but there was no way I could ever amputate it.
This is where the journey began!
After that first doctors appointment we researched like maniacs to find anyone anywhere who was specialized with Caleb's condition. Believe it or not, FH is extremely rare and most ortho's will see a handful, if that, of cases in their entire career. That is why amputation was suggested for Caleb. Most orthos have little or no experience with FH so amputation is almost always suggested instead of treatment. Knowing what I know now I realize that amputation in some cases really is the better option. Prosthetics are pretty incredible these days and some people would argue that it is easier than undergoing a lengthening procedure. But in our case, I wanted the option. I wanted to find a doctor who had experience with Caleb's condition and then make a decision as to what we were going to do.
I can't remember how many doctors we saw and/or contacted regarding Caleb, but it was a lot. We were driving all over the place getting third, fourth, fifth opinions and then finally we learned of a doctor out of Baltimore who specialized in FH and treating limb deformities. His name was Dr. Dror Paley. In my heart I knew that if limb lengthening was going to be the route we were taking, it would only be by a doctor with extensive experience with the condition. I was prepared to pack us up and go to Baltimore for Caleb's treatment, but the next step was finding the right time to do the procedure.
The most important thing I have learned in my life is to follow your intuition. I have always trusted my gut and looking back I see that I have always made the right choices, even if I didn't know it then. In regards to Caleb, I knew that rushing to surgery would have been a mistake. No one knows your child like you do, not even the most skilled surgeons, and I knew Caleb wouldn't be able to handle the surgery at such a young age, despite doctor's recommendations. Dr. Paley's team typically performs the first lengthening at around 2 but ultimately it is always the parents decision if they want to wait. I am truly glad we waited and I see now that it was the right decision for our family. I know that Caleb wasn't ready.
Two years ago we got the best news that anyone could ever ask for.......Dr. Paley moved his practice from Baltimore to West Palm Beach, a mere 1 hour drive from our home. I'm glad I followed my gut because we didn't have to go to Baltimore for treatment, Dr. Paley came to us!!! God's miracles are awesome if you are able to recognize them.
As Caleb's surgery is just 2 short days away on July 11th, 2012, I can't help but feel anxious that in 6 long months this will be behind us. I think we are ready for it as a family, and I think Caleb understands why we have made this decision for him. It will be a long and difficult road so keep us in your prayers during this time.
No comments:
Post a Comment