Why, why why??...A Parent's Heartbreak

This is a common question my almost 3 yr old poses to me everyday, but "why Mommy", "why are we doing that Mommy"...etc. Recently Keith and I found ourselves reverting back to our 3 year old ways, asking Why, Why, Why God?

On October 10th we got our 20 week ultrasound....and to our delight we found out we're having yet another little boy. Then about 5 mins later, 3 little words change our life, our demeanor that day, and rocked our world. Those words were...."there's a complication". This sentence was followed by "everything else looks good, appears to be healthy and on track, but..."with that my heart sunk. You never imagine those words will be presented to you and your not sure what to do with them when they are.

We were told that the baby was missing a bone in his right lower leg and the other one was underdeveloped. After hearing this, tears ensued and all other information that was given to us was lost and not processed. The day I had looked forward to for the last few months turned into a day I wanted to forget. The next day I was sent for an amniocentesis (which test for chromosomes deficiencies, which after 10 days of waiting for the full results, they came back normal) and I wondered if it's just a leg defect, then why do I need this? Is there something more?

I was also sent a week and half later for a 2nd ultrasound to check the leg out more. As I sat through the 2nd ultrasound, it was so painful, no joyful feeling. There was a little cute face, a heart beat, and this leg that just looked like a blob and not "normal". They continued to focus on the leg and all I could do was cry. I thought about how I had wished for more ultrasounds to see my baby and now I didn't want one.

Those two weeks were an emotional roller coaster full of joy, sadness, anger, grief.......and then like a light went off, acceptance. My OB says I was going through the stages of grieving....and I thought -What? She said, I had lost the baby that I thought I was going to have, a "normal" child. As I finally brought myself to look at the 3D ultrasound pics of his face...I fell in love with the baby boy I was meant to have and who was a true gift from God, a miracle.

The condition the Baby has is called Fibula Hemamila. It's a condition that happens in 1 out of 40,000. He has a underdeveloped and bowed tibia and no fibula (the two bones that make up your bottom portion of your leg) on his right side. .We learned that this was probably due to some type of blood flow blockage or restriction when he was developing.

We have consultant with CHOP, DuPont, and Sinai Hospital in Baltimore. The out come is that the flow of blood in his leg looked good now and they believe he'll be ambulatory. He would need a few surgeries (prob 3) throughout childhood- a reconstruction of his ankle and straightening of his tibia and then two limb lengthening surgeries. Luckily, it's better to have a missing fibula then tibia as the tibia is your weight baring leg. The echocardiogram and the ultrasound showed all else appears healthy and right on target.

The procedures/surgeries wouldn't start till he was a yr to 18 months old most likely. He'll have a long road ahead of him with PT and all, but the outlook is good. We're feeling very fortunate that this is the only complication as we saw other very sick kids during our hospital visits.

The funny thing about this experience was that it brought Keith and I even closer, which we didn't think was possible. We also named him, which is a shock to begin with since Aiden's name came to us very last minute, but we felt we needed to come up with something to bond due to his circumstances. We also changed our mind and are sharing due to his situation. It will be....... Jonathan Paul. Few meanings behind it- Keith’s two favorite Beatles, even though Lennon spelled it JOHN. Also a little tribute to his cousin that passed in August that was a drummer living in CA (He was also John, but Paul was his middle name) and Jonathan means gift from God, which we feel he is. Our parents and Keith have already nicknamed him JP and Aiden apparently doesn't like the name Jonathan, he prefers we name it Baby.