Abbie’s Scoliosis Journey

Abbie is 14 from Northamptonshire with scoliosis and needs surgery desperately to give her the best chance of living a full and able life.

During a holiday in summer 2019, we noticed that our daughter Abbie had a slight crease to one side of her waist. This hadn’t been something we noticed before, but as she stood with her back to us in a bikini, it looked as though she wasn’t standing straight. We thought there may have been a problem with her hips and need physio, but nothing could have prepared us for the news we were about to receive.

In September we saw a consultant at our local hospital who sent Abbie for an x-ray. I will never forget sitting in that little room holding Abbie’s hand as the consultant said, “Have you seen this?”. I responded, “no” and, as he turned the screen round we saw Abbie’s spine for the first time. Suddenly Abbie seemed much smaller than she had moments earlier. We were given the news at age 13, that Abbie had scoliosis.

In November 2019 we saw a further consultant who diagnosed Abbie with Adolescent Idiopathic Scoliosis. Her curve was measured at 70 degrees, an increase from 63 degrees in the September. We were told that she will need full spinal fusion surgery. This will mean that she will have very little flexibility in her spine. We can’t begin to imagine what this will mean for her and what limitations this will put on her later in life.

Currently the wait for spinal fusion on the NHS is over a year. Scoliosis is a progressive condition and whilst Abbie grows, this will mean her curve increasing. She is already in pain and discomfort and it breaks our heart to see her like this.

In February 2020 we travelled to London to see a consultant about another surgery option for Abbie called VBT (vertebral body tethering). This is where a tether is used to try and pull the spine back in line rather than using metal rods. Sadly, we were told that Abbie is not an ideal candidate for VBT as she has very little growth left.

But, there is good news! Abbie’s spine has really good flexibility. The consultant said he is able to offer anterior fusion going through the side, rather than her back. Most surgeons go through the back as it is less work and the standard way of doing fusion. However, he said you can get a much better correction through the side and removing a couple of disks, meaning that he can fuse less. This also means less damage to the spinal muscles as it allows more disks to move and retains more flexibility. Again, there is a window of opportunity to do this.

Abbie is a kind, bright and wonderful daughter who aspires to become a scientist. She has the biggest heart and always thinks of others.

Please help Abbie. We feel that this surgery will give her the best chance of living a full and able life.

Thank you for your support.

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