At 19 weeks pregnant, my husband and I were told that our baby’s foot had not formed correctly. That, combined with low fluid levels and not so great 12-week blood results, meant there was a much higher chance of a chromosome disorder…in particular, one that has a very short life expectancy.
We were given the option of doing an amniocentesis or adopting a ‘wait and see’ approach.
This was one of the hardest decisions we’ve ever had to make. I was so conflicted. Was doing the amniocentesis selfish? I knew I was putting my child at risk, but for what? To ease my own worry? And what if the results that came back weren’t the ones I wanted? What then? But if I didn’t do it how would I cope with the not knowing, the waiting, the not being able to prepare myself? How would this stress affect my baby?
After a great deal of agonising we decided on doing the test. Waiting for the results was the longest wait I’ve ever experienced. I must have checked my phone three times a minute, every waking minute, for those few days. When the doctor finally called it was like the world stopped for a moment as he told me that there was no evidence of any disorder. My baby just had “Clubfoot”.
I remember reading about Clubfoot (Talipes Equinovarus) for the first time. The doctor had diluted it for us in his explanation, so when I read what was actually involved I remember everything around me going blurry, there were only words and pictures on the computer screen and a horrible, twisted feeling in my stomach.
I am painfully aware that in the grand scheme of things we are extremely lucky and blessed, but I think we all want our children to be ‘perfect’. I don’t mean that in an offensive way. I’m not talking pageant pretty or child prodigy…I mean it in a sense that we want nothing more than for our children’s lives to be as uncomplicated as possible. We don’t want them to suffer any more than any other child, to feel pain, to struggle. We want them to be healthy, happy and able. The thought that they might face challenges that the majority do not is a really scary, sometimes even crippling, thought. When I was reading about the treatment of Clubfoot I thought of many things…but mostly it was the inconceivable thought that he would be in pain and uncomfortable for potentially the first four years of his life.
In a lot of ways I wish they’d never told me about my son’s foot at my 19-week scan. I feel it robbed me of some of my pregnancy joy. Instead of spending my precious moments thinking about what colour to paint the nursery or what cot set was the sweetest, I spent the next five months wondering whether he’d fit into a standard car capsule with his foot brace, trying to work out how I’d be able to nurse him properly, how I was logistically going to travel the 2.5hr round trip each week to PMH with a toddler and a newborn in tow, how much pain and discomfort the treatment would cause him. I wasn’t thinking about the beauty of pregnancy or the miracle of having a little baby growing inside me. I was distracted by the what ifs, and the unknowns, and the fears associated with something being ‘wrong’ with my baby, something that I had no way of fully comprehending or understanding until after he was born.
Soon after my son’s birth the paediatrician visited to officially diagnose his condition. I had been holding onto a vain hope that his clubfoot would be “positional” (requiring only physio) rather than “structural” (a genetic condition that requires treatment with the Ponseti method). I remember how I couldn’t stop my tears as she attempted to manipulate my son’s foot into position. The world shrank in that instant and all I wanted to do was punch her in the face and wrench my child out of her grasp. He screamed (a high pitched blood curdling scream) as she promptly diagnosed “Structural Talipes Equinovarus”. I tried to hold my head up high, I tried to be strong for him, I tried to remind myself that this was nothing, this was ‘fixable’, this was a blessing compared to the struggles of other parents and children…but it was really really hard. I felt scared. I felt overwhelmed. I felt like I must have done something wrong. I blamed myself. I felt responsible.