A Clubfoot Jouney#8: Alex's Story

This little guy has quite the story to tell...

I had just turned 41 about a month before I found out I was pregnant. Lots of things filled my mind. How could I start again with another one. My youngest was 6 and finally didn't need me as much, my older one would be entering high school in the fall.  As time went on all I had were cramps and spotting I figured I was headed down the road to miscarriage.  I remember making the first appointment and asking if anything went wrong should I call them before my appointment.  Just go to the ER they told me.  I wasn't hopeful. Still spotting and cramping they asked me if I wanted to do some testing for the baby (ie CVS and amniocentesis) as I was older and this pregnancy seemed different. We tried the CVS and I was having contraction too bad to have it done so I decided to have a amniocentesis.  There's a 1% chance anything would go wrong and I would know for sure what if anything was going on with the baby.  I had the amnio and it went very well.  No problems during it, was text book. However they wanted me to come back next week just to make sure.  I was 15 weeks at this time.

So I came back the next week and watched my little one on the monitor, heart was beating all looked good to me but suddenly the tech left the room.  I knew what that meant.  Something was wrong. Little panicked I reassured myself that the baby still had a heartbeat. The doctor came in and told me the baby had low amniotic fluid.  At that point they knew I was leaking and they were hopeful that it would seal up within a week.  It didn't....I had Pprom. (preterm permature rupture of membranes) at 15 weeks and there's only a 5% of survival from that point as it usually ends with  going into labor or get an infection

3 night later I leaked so much I ended up going to the ER to see if the baby was still viable. Still low, heart still beating, they released me as there was nothing they could do unless I went into labor. I had hard contractions that night and went to the doctor the next morning  thinking we were done.  However there the contractions stopped, fluid still low but not any worse.

Every  doctor visit after was a grave scenario : it was the prepare for a micro-preemie IF we get to 24 weeks and then he went into the signs of early labor.  It was a tough emotional roller coaster. Will he survive, if he does will he be disabled?  

Around the 19 week growth and development scan  they told me he would most likely have clubbed feet due to the lack of fluid.  Seeing the look in my eye as now there was no way this little guy was coming away with this with no problems.  The Doctor  wrapped his arms around me "He'll be small and clubbed feet are fixable." "I could live with that." was all I could say praying that's all I was going to have to deal with with this little guy but he had to survive  first and continue to stay put.

Don't you know that is exactly what that little guy did.  He surpassed  all the doctors expectations for him. Despite leaking fluid, I never got an infection or went into labor.  The fluid went back up near the end and he was finally out of danger.   However I ended up being in danger due to them finding placenta accreta  while having so many ultrasounds.  So his birth was as adventurous as the pregnancy, the doctors prepared for the worse case scenario with me. But like him.... we both ended up with the best of the worse case scenario.   At 38 wks he was 5lbs 8oz and had  bilateral clubbed feet.

My parents visited me after and told me he had them.  I told them "I'm not surprised they told me to expect that."
"Why didn't you tell us?" they said.
"Because they told me a lot of horror stories during that time and clubbed feet was low on the list."  

The clubbed foot journey has been quite the experience as when I had him although I knew he might, since they were wrong with just about everything I hoped that his clubbed feet were as well.  I didn't know how long this journey would take or just some of the basic stuff when you have a baby you take for granite but have to think about when dealing with casts or boots and bars. I look back at the beginning wishing I knew more.

I brought him home with his first set of casts on . People would ask me how long would I have to have him in casts or the boots and bar and everything else.  I remember not really knowing, thinking at first he would be done after the first set of casts.  How wrong I was.  Then when he got his first set of boots and bars dealing with the straps and then him fighting to get those suckers off and rubbing sores into his heels.  Fighting my instincts to protect him and stop him from crying as he hated them and would wail continuously till he wiggled out of them (and did!). Then the surgery, I felt funny having a baby at 7 months during the summer with thigh high casts on.    I wrote on them and colored them to make them look stylish. I even wrote that he had clubbed feet on them as I got asked all the time.   But I have to say.... Thankfully the clubbed feet community shares all the "hacks". the ups and downs and preparing for what's next that we have to go through.  So far we've been through 3 castings, tenotomy  surgery, 1 ponsetti bar and 2 dobbs bars and now SMO's for being flat footed. .

So here we are almost 15 months into the journey and he's still trying to figure out the walking thing.  He's very happy and healthy. He's my little ball of sunshine, with a smile that lights up a room.
Boots and Bar at night, SMO's during the day. He's usually good with them but there are days our patience gets tested.  Not so much now as in the beginning of this journey. I think back to that conversation with the doctor...."He'll be small and clubbed feet are fixable."  "I could live with that." my conscious is right there to remind me things could have turned out much differently and how lucky we both are.

Thank you for letting us share our story