Asher's Journey

Asher’s story.

First off, for those who don’t know us, we have three children, a 4-year-old little girl (Emersyn), a 3-year-old little girl (Quinn) and our little boy is 7 months old (Asher). We were so excited we were having our baby boy! Everyone just thinks about the fun exciting things that go along with pregnancy and having a brand-new baby. Nobody thinks about things that can go wrong. I was one of those people until my 20-week ultrasound. An email was sent to my phone stating I had a new result on my chart, so I logged in anticipating seeing what they had to say about our perfect and healthy baby boy. I was wrong. They had found that he had a clubfoot. Clubfoot is defined as “a deformed foot that is twisted so that the sole cannot be placed flat on the ground. It is typically congenital”. At a follow up ultrasound, we found that our sweet baby not only had one, but both of his feet affect by clubfoot.

We sought a doctor at a Children’s Hospital near us when I was pregnant to get more information on the treatment and outcome once baby Asher was earth side. They explained the typical treatment plan, showed us a slideshow of a success story, told us to call once he had arrived and sent us on our way. Asher was a born April 19, 2021. Our little baby boy had finally arrived and to be honest, I was completely obsessed with his adorable little feet that were not the typical baby feet. His feet were turned in, and up facing his chin. We contacted the doctors and set up our first appointment with them for when he would turn 6 weeks old. At the time we did not know that typical treatment actually should start only a few weeks after baby is born.

We traveled the 1.5 hours to the appointment with our 6-week-old little baby. At the appointment, they told us that his feet were too little to begin the casting phase and that we would have to come back in 2 weeks and hope at that time they would be long enough to start the process. Prior to him being diagnosed, we hadn’t even heard of clubfoot, so we just trusted that they knew what they were doing and agreed. They started the casting process at 8 weeks of age. We were to go back weekly for cast changes until his feet were in the position to start the next phase. About a month into the process, he developed “skin irritation” on the inner parts of his thighs, so at that point we were instructed to just take a break and send pictures the following week to see if it would be better enough to restart the process. We were even told to “take him swimming in a lake” if we wished. Thinking back, I cannot believe a “specialist” would give such advice to parents with a baby who has open sores. The following week he still was not ready, so we had to wait yet another week. Throughout this process we continued to ask how they thought the progress was going and every time we were told he was doing great. Again, they are the experts, so we trusted they knew what they were doing. After the 9th casting, we were told that he may not progress any further until the next phase was complete. The next phase is called a “Tenotomy”. A Tenotomy is defined as “the surgical cutting of the tendon, especially as a remedy for clubfoot”. They said that his “dorsiflexion” which is the up and down movement of the foot was not going to get any better until the Tenotomy was performed and then we would continue casting a few more times before the end phase. At that time, I had a bad feeling. To be honest, I had a bad feeling way back when he started getting “skin irritation”, but I chose to trust the process. We sought a second opinion at that time.

I reached out to a support group that I am a member of, on Facebook and all of them agreed he was not getting the correct treatment and most believed they made his feet worse. They recommended we seek a second opinion from a highly sought out doctor from Florida. I reached out to him on Facebook, and he was kind enough to respond and let me know he agreed, that our son’s treatment was botched and that he would be happy to see him. His assistant reached out and gave us the information. At the time, we thought that was out of reach not only because we have jobs, 2 other kids, animals to tend to etc. At home, but also financially that type of trip would be very taxing. We thought that to seek treatment in Florida was out of reach.

We asked around the community to see if anyone else had a child with a successful treatment around us. We were told about another doctor that was 1.5 hours away from us, located right in Wisconsin. My husband and I loaded Asher up and took him to see this new doctor. We planned to see how we liked him first. He answered all our questions and seemed to really know what he was talking about. He had also asked if with his castings previously if he had a problem with “slipping of the cast” meaning the cast would start to slip off, causing the foot to become more complex, or harder to treat instead of correcting it properly. I admitted I had questioned it a few times, but again the other doctors did not let on that anything was going wrong, so I let it go. He asked if we wanted to start treatment that day and we agreed. The first following up back to him, a week later, Asher still had the skin irritation that he had previously, and our new doctor confirmed that he had an infection. We had to pause the casting process yet again because of the negligence of his first doctors. We got his legs well healed up and then continued to cast him for 6 casts. We thought things were going great! At that 6th casting, the doctor was confident that he would be ready for the Tenotomy the following week. Asher had the Tenotomy done with another set of casts put on, that stayed on for 2 weeks to let the very small incision heal and so that his feet wouldn’t start to go back to the original state. At Asher’s two-week post-op visit, we were supposed to start the final phase which is called “boots and bar”. The boots and bar are used to hold the child’s feet turned outwards and in the corrected position. This continues until the child is around 4 years old. Yet again, another disappointment came about. The doctor stated that he would need another repeat Tenotomy and that he wanted to try to put Asher in the boots and bar for a few weeks to see if he could naturally get his feet to get more up and down motion. We could not even get the boots and bar on him. The doctor then told us we should let him take a week off. We went back the following week and he told us the words I thought I would never hear, “I don’t believe I can fix his feet, he needs a higher level of care”. My heart shattered into a million pieces; how could this be happening again? Do not misunderstand me, we still think very highly of this second doctor. He has treated many other babies successfully. He was a good enough doctor to know his limits and to tell us that he didn’t feel he was the answer any longer to Asher’s next step of treatment. He did make some progress with Asher, but Asher is a hard case. I commend him for knowing his limits.

have made the decision to seek treatment in Florida with a world-renowned physician, Dr. Matthew Dobbs. He is the physician I was in contact with prior to seeking the second doctor. At this time, Asher needs the absolute best. He deserves the absolute best. And that is what we are going to give him.

This will require me to miss work and require us to travel to Florida for 2 weeks for the treatment process. We will also need to have follow up visits. Asher will go through an “accelerated” first phase with a second Tenotomy at the end of the two weeks. We will need to follow up 3 weeks after the Tenotomy to start the boots and bar phase. We will then need to be seen for a 1 month, then 2 months, then 3 month follow ups. He will have at least 2 follow ups per year until age 4, with eventually being able to have half of the visits virtually.

We plan to continue to write about Asher’s progress. Please keep us in your thoughts and prayers. This is a huge decision we have made, and it is going to be hard on all of us to be away from each other. I certainly hope Asher does well out of his element and away from his home. For two weeks our family will be separated, and Asher and I will be temporarily calling Florida “home”.

Much love,

The Denning Family