My baby wasn't born "perfect"

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.

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.

I remember giving our son his last bath before he went in to get his first cast at 9 days old.  I watched him looking so beautiful and relaxed, his little legs gently kicking and I felt cheated.  For at least the next two months of his life he would need to be sponge bathed.  It’s such a small thing, but sometimes it’s these types of things that can hit you the hardest.  Bundling them up in big fluffy towels all freshly washed and sweet smelling, this is a precious moment I missed out on.

After the castings he moved to wearing a foot brace 23 hours a day.  For the first couple of days in his boots he cried almost non-stop.  It was awful.  The pain he must have been in.  To watch him and not be able to do anything felt like having someone literally rip your heart out of your chest.  It also felt like I was failing him.  I’m supposed to fix things.  I’m supposed to stop the pain.  I’m supposed to make his world feel safe and comfortable.  I’m his mum, that’s my job…

At times the cast and brace felt like a wedge between us.  I couldn’t hold him snuggly, I couldn’t nurse him comfortably and he couldn’t hook his legs around me like a little koala.  I was plagued with worry that this would somehow impact our bonding.  I have such a love/hate relationship with the boots and bar.  Without them my son wouldn’t walk, but having to put them on him every night and watch as he struggles to find a comfortable position on his back or every so often hearing him say “no” and vehemently shake his head and push them away makes me hate them.

My son is now nearing his second birthday and he’s down to wearing his brace about 11 hours a day.  This will continue until he is at least four years old.  I’m sure that we will face further challenges, but ultimately he is a beautiful, fit, resilient little boy with “a world to be born under his footsteps”.  He has taken it all in his stride with such strength and acceptance.  He rarely fights it, he smiles so full of sunshine and light, and he walks and runs with a swagger that makes us laugh – proud… uninhibited…joyous laughter.

No matter what your situation, it seems there’s an overwhelming (sometimes aching) want to trade places with our children when they are suffering.  Wishing you could take their pain away, ease their distress.  The “I’d die for you” mentality that comes with being a parent.  Then there’s the scary realisation that this mentality has no end.  It’ll come up again the first time they get their heart broken, or injure themselves, or fall short on a dream, or feel teenager peer pressures.  Even when they’re as old as us with kids of their own and sitting down feeling like I am now. We’ll still want so desperately to take their place, to take away their pain, to suffer through it for them.  But that’s all part of the gig right?  Sure is…but it’s certainly not one you can prepare yourself for, even when you’re right smack bang in the middle of it.  ?

But hey, there’s a flipside. In order to feel such an intense desire to trade places we must first experience love at its purest and most powerful.

Have you ever had, or refused, an amniocentesis?