What You Expect When You’re Expecting…
With both of our children I was filled with over the moon excitement when I learned I was expecting. Just like all new moms I couldn’t wait to reach that 20 week mark and find out the gender. The 20 week ultrasound holds far more importance than just learning if it’s a boy or girl. That ultrasound is the doctor’s opportunity to ensure everything with the baby is growing and developing appropriately. I was overcome with worry over the potential for something to be wrong. It left me holding my breath for the entire exam. I prayed that everything was progressing as expected. Reality is that as your little one grows inside of you there are a million pieces that need to fall into place correctly. And sometimes the pieces just don’t line up and boom your perfect little baby has a congenital birth defect.
Ultrasound Day Arrives!
With our daughter’s ultrasound, sunshine and rainbows, everything was perfect! We left our 20 week ultrasound floating on a cloud of excitement. But with our second baby, our son, the ultrasound didn’t go as well. My second pregnancy was completely different from my first in every way. My daughter we had planned , with the second pregnancy, total surprise. I had bleeding and cramping early on in my pregnancy with my son, leaving me constantly worried that I was going to loose him. With my daughter not even a day of morning sickness! Thankfully we had made it to 20 weeks and as we entered the ultrasound the waive of anxiousness washed over, and I began to hold my breath. The ultrasound began, showing the beautiful profile of our baby. 2 arms, 2 legs, belly, head, fingers, toes, beating heart, and yay! IT’S A BOY. I started to relax a little. But the exam seemed to be taking an extremely long time, and the tech seemed to be going back and taking more pictures over and over. As a nurse, and a mom, I think it makes us able to read people, and I could read the uneasiness written on the technician’s face. She handed us our pictures and said she was going to have the radiologist come in and take a look. She didn’t provide any more explanation and scurried out of the room. My husband and I sat for what felt like an eternity for the physician. He was very kind. He sat down and shook our hands and said there are some findings on the ultrasound he wanted to talk about. I exhaled. To this day I feel that deep in my gut I knew those words had been coming. It was just validation to my mother’s intuition that something was just not right. The doctor said, we believe your baby has a clubfoot.
Clubfoot, say what?
Clubfoot is the most common musculoskeletal birth deformity, affecting nearly 200,000 infants a year. Though treatable, clubfoot can be associated with other complications and syndromes. As the doctor explained to us at our ultrasound that we would need to follow up with the genetics counselor and a high risk obstetrician, I felt as if I was frozen. My head was spinning with questions, none of which anyone could answer. This was the harshest reality of all. No one could 100%, without a doubt, predict that our baby would be okay. They could do their best to confirm with ultrasounds and genetic testing, but none of the results carried a 100% accuracy. So from that point on, there were frequent ultrasounds, genetic testing, inconclusive results, and worry, lots of worry. So I held my breath, for the next 19 weeks. The only thing that gave me a sigh of relief was when my sweet baby boy finally entered the world, kicking and screaming.
But he did have a clubfoot. It is something that has greatly impacted his life from day 1, and ours as parents. At 4 days old he was placed in his first cast. This was followed by weekly casting for 8 weeks. Then he had his first surgery at 8 weeks old. Since then he has had to wear a brace on his feet 23 hours a day, his only break is during bath time. The brace is quite a contraption. I can guarantee that majority of people who see it have no idea what it is for. But I see the questioning stares, the gawks, the points. Don’t even get me started on the judgments made when he was in a cast. I of course, have no issue with educating people on the contraption that is helping my son’s foot grow correctly. I have no issue with advocating and raising awareness for World Club Foot Day. But what is difficult is coping emotionally as a parent of a child with a birth defect.
The days are hard, but it will be worth it!
As a mom, there is tremendous guilt. You question if it’s your fault. Sometimes it is overwhelming to think that we are our son’s only hope at correcting his foot and preventing him from having a permanent disability. The bracing of his feet is essential to correcting his foot, but it is also the hardest thing I have ever had to do. Every day I wrestle my infant into this device that prevents him from doing the very thing every baby wants to do, kick his feet and play with his toes. I have never been able to cradle him like a typical infant. Of course we have adapted, but on the hard days I can’t help but be sad that I just cant wrap him up and snuggle him like a normal baby. As he has gotten older, we have had more issues with him kicking the braces off. And the frustration can be insurmountable. Especially when you spend 15 minutes putting the braces on to have him kick them off after 2 minutes. Jake will need braces until he is at least 5 years old. So this is our reality for the long haul. How do we get through the days? I keep reminding myself it will all be worth it when we see our little boy running the bases to home plate or chasing his sister down the hall.
It is my hope after reading this that maybe next time you see a mom and her perfectly imperfect baby, please don’t stare, smile.
For more information on Clubfoot Awareness please visit:
