Sarah’s Story

From Poor Prognosis to Beautiful Ballerina

Every time I see her perform on stage, that choked up feeling just overwhelms me. Sarah is my precious baby girl, born 16 years ago.  I want to share her story to encourage other families. Even though prognoses can be devastating at the time, with the right tools and support, much can be overcome.

It all started at week 28 of my pregnancy

Sarah is my 2nd born. We were so excited to announce to family and friends at her sibling Jonathan’s first birthday that another baby was on its way!

I was certainly not one of those favoured mothers who sail through pregnancy looking radiant, but the 2nd trimester was relatively good. We looked forward to a lovely Christmas break at the beach with family. Arriving home after Christmas, I realised that I had picked up some bug and I struggled to shake it. 

At my 28-week check-up, the midwife said to me to ‘not pass go’ but phone my husband to join me, and head directly to a gynecologist. From there, things were tough with several courses of antibiotics. I continued to lose weight and could not keep food down. From a normal weight of 60kgs, I dropped to 50kgs (with a nearly full-term baby) and was continually tired and nauseous.

One of the possibilities they thought was causing the problem was gallstones. I was scheduled for surgery at 36 weeks. When I went to see the surgeon, he very graciously asked if I would try one more set of antibiotics. He assured me it was just for 24 hours since he had a hunch he had seen someone like me before. Since I knew the risks of surgery, I agreed, and the surgeon was spot-on!

After the 24 hours, my life completely changed around.  The gynecologist was still concerned as baby had not grown from 28 weeks. I had to travel to the local hospital every 2nd day for the last month to be monitored.

I remember the day we hit the 40 weeks and our gynecologist telling us that he could not take the stress anymore. His words were, “Please, for my sake, can we take this baby out now?”

And then can the Birth day

A scan from the day before D-day showed our baby’s estimated weight to be 1.5kgs. We were warned that our hospital stay may be lengthy. I arrived at the hospital at 5am and had the induction injection, excited that I was about to meet my miracle. Contractions began slowly, but by 2pm, Sarah’s heart rate was slowing and the process of prepping for theatre began.

And then she came!

As most Mum’s will remember those moments of first meeting, it is something indescribable. With tears down his face, the gynae handed my little girl to me. It was only later he told us that he had not expected that she would be whole. And, HUGE surprise, she weighed in at 2,5kgs.

The next 3 days were a blur, but I do remember words from the Paediatrician like, ‘She won’t meet normal milestones’ and ‘She may never walk’.

Tough first months

Those first few months were tough. I do remember shedding many tears. My little girl battled to suck, and each feed was a struggle to get her to take anything. We had a huge celebration when during her fourth month (see picture), she finally reached 4kgs! As you probably would have guessed, she did not meet the milestones and her growth chart did not look as my 1-year old sons had. As time went on however, she did roll over and crawl (the one-legged type of crawling) and eventually walked.

And life continued and she grew and brought us such joy in all her inquisitiveness and joyful laughter. She just did everything with great gusto, from riding her little pink bike to making mud pies and dancing everywhere she went. At 5 years old, we had our first ballet lesson and she discovered the thing she most loved doing.

Ballet, ballet, ballet…

That moment of getting a first pink ballet costume and shoes take on a dream like quality for every would-be ballerina. Sarah just LOVED it.  We lived from lesson to lesson with such excitement particularly over each performance.  She just lived to be on stage. From little, the ultimate dream was always to dance on pointe.

I do remember the day, however that the ballet teacher asked me to stay after a lesson.  All my fears somehow flooded back in during that moment. She asked me about Sarah’s ‘problems’ and suggested that we see an Occupational Therapist. I knew it was the right thing to do but it was SO hard to make that appointment.

“So what programme did we follow???

Once the assessment had been done, I sat ready for another prognosis. For those who have had to face this, you know the feeling. I think the moment that she asked me ‘So what programme did I follow?’, I knew something incredible had happened.

I certainly HAD NOT follow any programme. The only thing I’d known how to do was just passionately love my little girl and never stop her from following her two brothers into all their many, busy adventures.

What transpired eventually of that session was that the OT was fully convinced that our business of making Jungle Gyms had been one of the incredible ‘tools’ that we had unknowingly used to give constant ‘therapy’ to our precious daughter. From little she had been exposed to and learnt how to walk / climb / hang etc on the many Jungle Gyms right in our yard. As one of our children, she was a ‘guinea pig’ for new designs.

And onto pointe we go…

So, from the prognosis of the possibility of not being able to walk, our beautiful young woman got to go onto pointe last year in ballet. Yes, she is strong and determined. Yes, it hurts. Yes, it is hard work. But she has achieved her dream and I am SO proud. I guess I am destined to carry tissues every time I watch her in a ballet performance. She is amazing!

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