When a mom is told her baby has Bilateral Talipes she feels as if her world has fallen apart. She questions if this is her fault and could she have done anything differently? Then she has to deal with the stares and finger-pointing from other mothers who believe she must have abused or neglected her baby in some way.
Not only did this inspiring mom have to remain strong, she had a fight on her hands when the health professionals failed her and her baby.
My Baby Has Bilateral Talipes – I Did Not Abuse My Son
How could they expect me to just go home and await an appointment letter to see a consultant? They had just informed me that my son Hayden had something terribly wrong with his feet and I was worried sick. With nobody to explain what was wrong, I instantly thought about the worst case scenario.
I had no idea what it was but my baby had Bilateral Talipes and it sounded bad. Thankfully the appointment came quickly and we found ourselves sat in a waiting room trembling.
“Clicky hips” was a phrase the nurse had used; she had not read his medical file correctly so when the consultant diagnosed Bilateral Talipes I felt my world falling apart.
What did this mean for my baby?
Would he ever be able to walk?
Be able to run around and play football with his friends?
Would he even go to school like normal kids?
The consultant briefly explained what Bilateral Talipes was although it went in one ear and out the other, I was trying so hard to listen to his words yet my head was spinning and I just wanted to scoop up my baby and run as far away as possible.
Hayden would have to wear a cast for 12 weeks. The cast would need to be changed at weekly intervals. It seemed that his right leg had corrected itself; this meant that only his left leg had to be placed into a cast. It was some comfort; at least both his legs would not be in casts.
Things seemed to happen too fast and before we knew it we were seated in the waiting room for the plaster cast to be applied. I felt my body shaking and the tears start to fall. I couldn’t go in there. Hayden’s dad took him in to have the cast attached. I sat in that waiting room feeling the worst mother in the world.
As I heard my baby scream and him crying out, I cried and the guilt I felt then will never leave me. Others in the waiting room glared at me; did they think my baby was in there because I had hurt him? That I hadn’t cared for him properly?
“My baby has Bilateral Talipes” I wanted to scream. “That is why he is having his leg put in plaster, not because I have hurt him”. But the words would not come out. Instead, I sat and looked at the floor. It was a relief when the door opened and out came my baby, his face wet with tears.
We had to now see a physiotherapist, but leaving the hospital confused and frustrated as again nothing had been explained to us. I took to Google later that night, probably not the best thing to do as I ended up in floods of tears after reading about the possible operations he would have to have and the negative outcomes.
Was this my fault? If not why did I feel so guilty?
Because we could not get his cast wet we could only bath him once a week. We were to soak his leg for 30 minutes to allow the cast to become wet and then wrap it in cling film, before getting him dressed.
The first appointment to visit the physiotherapist came and things did not get off to a great start when she almost dropped Hayden when I handed him across to her. The atmosphere could have been cut with a knife, she never spoke to us as she cut his cast, gave us a leaflet and sent us back off to the plaster waiting room.
Having mummy with him this time, Hayden didn’t scream having his second cast applied. We were also given a special shoe for Hayden’s right foot, which would help his foot turn outwards. The physiotherapist lady was lovely. She took the time to sit and talk to us, the first time anyone had and she instantly fell in love with Hayden.
Facebook provided a shock for me when I saw a mother calling another mother names and told her that her baby looked retarded. This abused mother who also had a baby with Bilateral Talipes was left in tears, so was I.
Is this what others would think of my son?
I soon came across Steps, a charity for lower limb problems and I finally saw a little light at the end of the long dark tunnel we had found ourselves in. I posted on the forum and soon found Melissa to chat too; she was a great sense of comfort to me.
At the next cast change, there was a huge difference in Hayden. It really looked as if the casts had worked. We were dreading the fact that he may need a Tenotomy but after his 6th cast was removed we were informed he would not need it, I was so relieved. Looking at his foot as we sat and waited for his boots and bars to be attached something just didn’t look right but they told me the boots and bars would help correct this.
Looking back I wonder how I never fell to pieces. The summer time was the worst as when Jayden had a cast on everyone could see it. Instead of asking why people assumed. I felt like a bad mother and I was convinced people thought I was abusing Hayden. People would point and stare at the little baby who had his leg in plaster, I wanted to scream my baby has Bilateral Talipes, instead, I put my head down and hurried past.
In the playground one day waiting for our older child, a mom commented on my son’s broken leg. I quickly corrected her, he did not have a broken leg he had Bilateral Talipes and the casts were there to help his legs.
The boots and bars were OK but they gave Hayden painful blisters at first. The visits to the physiotherapist were few and far between despite me being concerned over the way his leg still looked.
After 3 weeks of wearing the special boots and bars, we returned to the hospital. I was upset and angry that nobody asked how he was, how we were or had we had all coped? No interest was shown. Being told to remove his boots around Halloween time, was the only words of advice given.
I felt afraid and let down
Hayden needed support, I needed support. The boots were causing pain and poor Hayden would be awake screaming most nights. He could not roll over as the boots were too heavy to lift and he would spend most of the night just lying and screaming.
As his mom this broke my heart, my baby was in pain and there was nothing I could do about it. He would raise his feet as high as he could and crash them down, frustrated.
I still wasn’t happy with the way Hayden’s left foot looked. Nobody was listening to me until one day I had reached a point of being passed caring. They would listen to me.
I gave the charity Steps a ring and after explaining everything to them they were disgusted. They suggested another physiotherapist by name and we soon asked for a referral and asked for an appointment with her.
Meeting her was like a breath of fresh air. She listened and she cared. She was not happy with Hayden’s recovery and sent him for scans. I felt so guilty, I had known all along that something wasn’t right but had listened to the professionals brush off my worries and I had never made them listen.
He now needed the Tenotomy and he would also need a different cast applying.
I felt I had let my son down
He had gone through all that for nothing. He returned for the operation soon after, he was 9 months old. If you’re a mother you will understand how difficult this time was, having your baby put to sleep and taken into the theater. An hour and a half felt like a lifetime.
He was screaming when I saw him, rushing over to him and picking him up I held him close. He didn’t stop crying, it turned into howling screams. I was terrified.
They could not give him any local anesthetic and I could only sit back and watch. Eventually, he was given Paracetamol and Ibuprofen. The physiotherapist was more than pleased with the results and we were soon allowed to take him home.
We were relieved that the operation had finally helped him yet were angry with the way we had been treated in the past as it could have been avoided.
We do not know what the future holds, everyone is different, all we can do is take each day as it comes. The word proud does not come close to how I feel about Hayden and I am so lucky to be the mum to 3 amazing boys.
My baby has Bilateral Talipes and it makes me feel sick to the stomach when others stare at me and throw accusing looks. If you ever some across a baby with a cast on why not ask the mom how shes doing, rather than judge her.
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