The difficult beginning to our journey

I’m going to be completely transparent and open regarding Paisley’s clubfoot journey. I plan on eventually sharing details on the blog about what it has been like to go through the entire clubfoot journey with our sweet baby. My hope is that this will reach other mommies of clubfoot babies and encourage them! I also want to remember, in detail, everything we went through so that Paisley can one day truly appreciate her ability to walk, run,and live a normal life to the fullest degree. I want her to be able to read about this clubfoot journey one day so that she can look back and rejoice that God chose her to have clubfoot so that He could glorify Himself through her. More than anything, I want God’s name to be made great through Paisley’s clubfoot journey and everything He has brought her through.

We were very hesitant to share with everyone that our little baby was going to be born with clubfoot. We eventually decided to share our story and it personally helped me a lot to share it on the blog. If you want to, you can read that post here. I also have a confession to make… When we shared our story, there was a big part I decided to leave out. I left that portion out for quite a few reasons. A huge reason being that we didn’t have all of the answers yet and I didn’t want anyone to worry unnecessarily. It is still a part of our story. I have met several other moms through clubfoot support groups who have experienced it as well so I wanted to share a portion of the beginning of our clubfoot journey that I originally had left out.

One of the main reasons for my hesitation to share with everyone that Paisley had clubfoot was that for a few weeks, the doctors were not sure if it was an isolated incident of clubfoot or not. Apparently when a baby has clubfoot, it can either be a completely isolated problem or it could occur in combination with other musculoskeletal, neuromuscular, or chromosomal problems. The 26-week level 2 ultrasound with the maternal-fetal medicine specialist was the ultrasound which confirmed Paisley’s clubfoot. We had that ultrasound on April 1st. At that ultrasound, we also were told that they found something called an echogenic foci in her heart. I had never heard of an echogenic foci before. Just the fact that they found a spot in her heart was enough to scare this already nervous first-time-mom. They made it clear to us that this echogenic foci would not, in any way, cause her heart to function abnormally. What a relief! However, they also made it clear that the finding of an echogenic foci is considered to a “soft marker” for chromosomal abnormalities. If they had only found the echogenic foci at this ultrasound, they wouldn’t be alarmed at all. If they had only found the clubfoot at this ultrasound, they also wouldn’t be alarmed at all. However, according to the doctor, the combination of those two findings (or, as they described it, “soft markers”) increased our chances for having a baby who would be born with a chromosomal abnormality. As I was lying on the ultrasound table and the doctor was relaying all of this information to us, he was trying to convince me to get an amniocentesis to know for sure. Here I am, pregnant for the first time, nervous as can be already, and now even more scared that something might be seriously wrong with our precious baby. The doctor was trying to act like the amniocentesis was no big deal at all. “You’re tiny. I will go get the supplies and be right back. It will only take ten minutes or so. It will be quick and easy.” I just felt unsure about it. It was so much to take in at once and I wanted time to register everything before we made any decisions. I knew that no matter what the results of the amniocentesis were, we would still keep our baby. I told him I wasn’t sure if I wanted to have the procedure done or not. He reluctantly gave me his business card and told me to call the office if I changed my mind. Gus and I went home totally unsure and devastated that day. We found out our baby had clubfoot AND that our baby may have a chromosomal abnormality and the only way we could know for sure was if we got the amniocentesis done. We let our families and a couple of close friends know about the echogenic foci and the clubfoot, but we weren’t ready to tell anyone else. We had to go to genetic counseling to discuss the findings.

The unknown was scary, but I finally gave it all up to God and put my trust into him regarding our precious baby girl. On April 3rd, 2014, I wrote a private journal entry on my blog to my unborn daughter. We were waiting for the test results and I was so overwhelmed with emotion. Gus and I had a long discussion that night and I finally began to embrace whatever God might call us to. (Like I said, I am going to be very transparent and open on this blog…so I will share that with you):

Sweet baby girl,
Mommy and daddy love you so much already.
We found out on April 1st, 2014 that you have something called bilateral clubbed feet. We also found out that they found an echogenic foci in your heart. These two findings indicate that you could possibly have a chromosomal abnormality or a neuromuscular disorder. Guess what? We are going to love you no matter what. Want to know why? Because God made you absolutely beautiful and nothing in the world will ever change that. We don’t know exactly what these two findings entail. On one hand, this could mean something major which we will have to deal with as a family OR it could simply mean that you have to be in casts for awhile after you’re born to help your little feet heal. Either way, you will be loved. Either way, we will trust God and know that He has a perfect plan for all of us. Either way, we will pray for you every day. We will do anything and everything for our little girl. I never knew I could love someone so much and I haven’t even met you yet! I know we are just going to absolutely adore you when you do get here.
We love you, Paisley Grace.

After a lot of prayer, research, and discussion, we eventually decided that we were not going to have the amniocentesis done. A little over a month later I let my regular OB doctor know that we had decided against the amniocentesis. He was very understanding and encouraging. He also made it clear to me that because of the two soft markers, they were concerned as far as proper prenatal care and my delivery. The hospital I delivered at did not have a NICU and they also did not see high-risk patients. Having a baby with a chromosome abnormality would require me to switch doctors in order to have proper prenatal care and a NICU available for any complications which may occur during delivery. He encouraged me to think about possibly getting a genetic test done called the maternal T21. T21 stands for trisomy 21, which is otherwise known as down syndrome. This genetic test can be done by taking a sample of my blood and then picking up traces of the baby’s blood cells through specialized testing.This would eliminate any of the risks to the baby that are associated with an amniocentesis.  After more research, prayer, and talking with family members, we decided to have the maternal T21 genetic testing done. We had the test done at the end of May and the results took 2 weeks to come back.

Exactly two weeks after I got the maternal T21 test done, I received a phone call from my doctor’s office. I was so nervous as I answered the phone. The nurse on the other end of the phone must have sensed how anxious I was and she quickly got to the point. In a sweet, energetic voice she informed me that the test results indicated that there was less than a 0.001% chance that our baby girl would be born with any kind of chromosomal abnormality! I instantly began to cry tears of joy. I was so thankful! In all reality, Gus and I had begun to mentally and emotionally prepare ourselves to potentially have a baby with serious special needs. I was overwhelmed with joy when we discovered that our baby’s clubfoot was, in fact, simply an isolated incident as far as they could tell, with no additional involvement. I cannot begin to describe to you how we felt.

No matter what the results of that genetic test were, we would have loved our daughter just the same. We prepared ourselves for bad news and hoped for good news. Looking back, we can see the goodness of God even in that trial. We put all of our trust in Him at a time where trusting Him seemed impossible.  No matter what the outcome of the test was, we were thankful for the baby he gave us the privilege to raise.

Being a mother is a special calling and a precious privilege. Having a child with special needs is a very special calling and, dare I say, an even GREATER privilege. Our daughter has a very, very mild deformity which can be treated with castings, corrective shoe wear, and surgeries. I don’t even consider her to have “special needs,” per say, just “special feet.” There are other babies and children out there who have more severe deformities and disabilities and their mommies and daddies have to face a lot more challenges than the everyday parent. I am amazed by those parents. I pray for those parents all the time. I cannot begin to imagine the daily trials they face with extra doctor’s appointments, surgeries, therapies…the list goes on and on. I’m sure they have some really, really rough days. I also know that they have some truly amazing days spent with some of this world’s biggest blessings. Children with special needs have some of the biggest, kindest hearts. God hand-picked each parent to care for those “special blessings.” I admire those parents. Your child is a beautiful part in God’s perfect plan and they are made perfectly — EXACTLY how He created them to be.

If you’re a mom or a mom-to-be who is reading this and you have found yourself in a similar situation regarding clubfoot and the echogenic foci finding, I hope this is an encouragement to you. I have met several moms through clubfoot support group pages whose babies also had the echogenic foci finding in their heart who were born with isolated clubfoot and no associated conditions. Doctors may unintentionally cause you to worry. There are so many clubfoot support groups on Facebook. It’s completely understandable to be scared of the unknown. Reach out to other mommas who are going through the same thing you are! You’re not alone. 

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4 thoughts on “The difficult beginning to our journey

  1. I just found out that after three boys, I am finally getting my daughter! And before I found out she is a girl, we were told she has a club foot. On the left foot for sure, with the possibility of the right one as well (but possibly not because she was moving her foot around at the time). I am elated and devastated at the same time. I get my daughter finally, but I won’t get to snuggle or swaddle her the same way I did with my boys. I have gotten over feeling worried, and have moved onto so many other emotions. I am so glad this is treatable, and to know she will be able to walk and run and everything else when all is said and done. But for.now, having to wait to see the severity of her feet is what I worry about. I am so thankful for finding out about your page. Now I am finding I feel like I can get our family through this.

    • Well first of all, congratulations on your little girl!! I’m sure you’re so excited. I know exactly how you’re feeling right now. I remember feeling that exact same way and experiencing those same emotions when we heard about our little girl’s clubfoot. It’s okay to feel overwhelmed and anxious about the unknown. I do want you to be encouraged that your daughter will amaze you through it all – and those babies are very tough and resilient! Her strength and progress will make you so proud of her as you go through clubfoot treatment alongside of her. Paisley still loved to be swaddled and snuggled, even with her casts! If you have any questions or just ever need someone to talk to about it who can relate, please feel free to email me! KaylaJ626@gmail.com – I hope the remainder of your pregnancy goes well! I can’t wait for your little princess to be here!

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