Our Talipes Journey October 15, 2015 – Posted in: News, Product News
Everyone knows the 1st trimester of pregnancy is a pretty shite time – for both mum and dad – sickness, grumpiness and Oh Lord the overwhelming tiredness but it gets better doesn’t it? As you head into the 2nd trimester, you can start looking forward to not staring down the toilet bowl every morning and of course, it’s during this phase that you get to see your precious bundle again and (maybe) find out whether you can stop calling it ‘IT’!
It was precisely at this time that my world was turned upside down. I was so looking forward to finding out if Sprout was a Pink or Blue and it didn’t even cross my mind that they would find anything ‘wrong’ with my baby but that was what happened.
This is mine and Sprout’s story of Bi-Lateral Talipes Equinovarus.
As I led there on the bed, I just knew there was something wrong. What does she mean she can’t see his feet properly? Where is she going? Why does she need a second opinion? Why is she taking so long? Clubfoot? Of course I don’t bloody know what that means……..
…….that was my 20 week scan in a nutshell (other than finding out Sprout was a Blue One but that seemed completely insignificant at this point). M and I were sent home, drowning in unanswered questions and all I wanted to know was what was wrong with my baby but those questions were left unanswered by any medical personnel, instead an appointment booked at 25 weeks to discuss Sprout’s “condition”. Thank God for Google hey? Uh NO!! Every story I read over the next 5 weeks killed another piece of my heart – here were people with the same condition as my baby telling me they wished they had never been born, they blamed their parents for not aborting them and allowing them the crippling pain of arthritis on a daily basis. Quite how I kept myself sane during this time is beyond me to this day. All I did was sob and I couldn’t help but think of the baby that I had ‘lost’ – the child that I had imagined no longer existed and although I loved him no less, I was mourning for my “perfect” baby.
I lived for that check-up at 25 weeks when I was sure they would tell me it had all been a huge mistake. This wasn’t what happened. In broken English, I was told that not only did my baby have Clubfoot (the basic mechanics of this were explained using a fabric doll and crude leg movements) he has a high chance of Spinabifida and Down Syndrome – cue my world imploding once more, a multitude of more unanswered questions, the suggestion of a termination and scans booked at The John Radcliffe hospital in Oxford.
That referral was by far and away the best thing that happened during this part of my pregnancy. The staff at the JR carried out thorough tests and, as much as they could, reassured us that other than the Talipes, we had a healthy little boy. To put our minds at rest further, they arranged for a referral to The Nuffield Orthopaedic Centre (NOC).
It was at this 1st referral that we met Sprout’s physio who gave a heavily pregnant me and M an in-depth look into what to expect and what the Ponseti Method of treatment would involve. Now it was just a waiting game to meet Sprout and assess the severity of his condition. All we could be certain of was that his treatment would last until he was 5 no matter how severe his condition to prevent a relapse. To a 8 month pregnant me, I couldn’t imagine my boy being 5 months old let alone 5 years!
The day he was born, I completely forgot to even look at his tiny feet and when I did I was shocked. They weren’t how I imagined at all and to my untrained eye, they didn’t look so bad. In fact, he was absolutely perfect.
To say I was petrified during his 1st assessment at 10 days old is an understatement. He scored a 6/6 in on his left foot and a 5.9 on the other – not the news we were hoping for. I was devastated…….. but there was no time for wallowing in my self-pity, it was time for the castings to begin. He was then re-cast every week until his tenotomy was scheduled, at this point he went back into casts for 3 weeks to allow the tendon at the back of each foot to grow back together. The ultimate goal was to length the tendons and give him up and down flex of both feet. So far, this was the most traumatic moment for me……… my tiny baby was wide awake and pinned down by adults who were taking a scalpel to his tiny legs – did I want to wait in the waiting room? Did I buggery, I want to be right here for my baby! It was over no sooner than it had began and with a bit of TLC from Mama, Sprout was back to the happy little boy I fell more in love with every day.
At some point, around 10wks of age and just before Christmas we were due to have his last casts removed and move to the boots and bar phase of his treatment. The NOC scheduled a routine hip scan. I believe they were working on the correlation of DDH (Developmental Dysplasia of the Hips) and Talipes. Nothing to worry about, there was nothing wrong with Sprout’s hips, the Paediatric Dr checked them right after he was born.
WRONG! I felt like I had been punched in the stomach. How much more could this beautiful small person take? He was diagnosed with DDH in both hips and would need to be in a Pavlik harness for approx. 3-6m. During this time, the next phase of his treatment couldn’t start. He couldn’t be in Boots and Bar whilst in the harness but couldn’t be out of casts completely because he would relapse. His physios and consultants compromised on some calf length casts for the duration of the Pavilk harness and as heartbroken as I was, they were the cutest little ‘snow boots’ I have ever seen!
After more scans and replacement casts (one that Mama pulled off!) I finally had the news I had been hoping for, Sprouts hips were making progress and he could be weaned out of the Pavlik Harness, at which point he could also go into his boots and bar! Due to the additional time spent in ‘mini’ casts, he wouldn’t have to have 3 months of 23hrs a day B&B and instead only needed 2 weeks before he would go into just nap and night time.
I will NEVER forget getting him home that day after the hospital. I sat with him on the sofa, stripped his clothes off and looked at my totally naked baby, in the comfort of my own home, for the 1st time since he was 10 days old – and I cried. I sobbed and sobbed and laughed and sobbed some more until his little bald head was wet with my tears. The love and pride I had for this boy at that moment in time was (and still is) indescribable.
Hip X-rays got moved to once a year and check-ups for this talipes and new B&B fittings reduced to 6 monthly. A month after having his casts harness off, a 7 months, Sprout started to crawl and Jeez did that baby move! Three months after that, he started to walk. That was a day that at 20 weeks pregnant, I never thought I would see.
Two and a half years after the worst day of my life, we returned to the NOC for a hip x-ray and check-up with Sprouts physio and he had made amazing progress – by no means were we at the end of our journey but we were well on the way our way! As we neared Sprout’s 2nd birthday, another 3 years in his B&B didn’t seem so unattainable….. there is a big bright light at the end of the tunnel.
Back in April, we attended a routine physio and x-ray appointment for Sprout. His feet are going great & look like that of most ‘normal’ children. His hips are a slightly different story. Unfortunately they are not making the progress that his consultants expect (despite being in the “normal” range and him experiencing no side effects or pain). Sprout’s consultants have discussed operations if things haven’t improved in the next 6 months & whilst I am not sure how I feel about that, it is a bridge we will cross as and when we get to it. If Sprout & his journey have taught me anything, it is to take life’s obstacles in your stride. Often you can’t move them out the way but you do need to find a way to overcome them. Sprout is 4 in October and I genuinely have no idea where the time has gone. I remember feeling like this nightmare was never going to end. It’s no longer a nightmare, it is part of Us, as much a part of our family life as eating dinner and arguing about now many times Mama has to endure Paw Patrol!
Every day, I am astounded by the determination my little boy has and how much he has taught me. Talipes Equinovarus is a relatively unknown condition that affects 1 – 2 babies in 1000 and is twice as common in boys as it is in girls and I would really like to raise awareness. Parents in a similar situation to me can contact STEPS who are an amazing charity that offer help and support.
I felt so alone and so isolated. In hindsight the fact that I couldn’t bath him whenever I wanted, or take him swimming really didn’t matter. The fear that people would see his little casts and think I had done something to hurt him was unrealised. I didn’t get many pictures of his feet in the early days – I think I was still very much in denial but now we fully embrace his beautiful Tootsies! The one thing I wished was that people would ask about his feet rather than pretend they hadn’t seen……. It’s OK, HONESTLY! Like most parents I love to talk about my baby <3