Katherine’s Story

by Rachel Perkins (Katherine’s mum)

Katherine was born by emergency caesarean two days before her due date, scoring 10s all the way on the Apgar scale (a test done soon after birth to check the health of the baby). It wasn’t until 21 hours later that a midwife asked if she could just hold her in the light – she thought Katherine might have swallowed a bit of sick as she was looking slightly ‘blue’. It turned out to be a bit more than swallowed sick, and from that moment onwards it was all a bit of a nightmare rollercoaster ride.

“Our consultant took my husband in hand and after introducing himself passed the comment that we would be getting to know him very well over the coming years!”

Katherine was whizzed up to the nearest specialist children’s heart hospital in an ambulance, followed swiftly by my husband Hugh and his mother, leaving me in our local hospital. I had to wait for a couple of days before being allowed to follow her. When I finally got there we were given a room on PICU (paediatric intensive care unit) where we spent the next nine weeks with a roaming midwife checking up on me every so often!

The whole thing was a complete shock to both of us. Being left behind for the first few days and then not being able to hold/look after Katherine was especially hard. I decided to divert my attention to more practical things and my mission became one of milk producer extraordinaire – I had a freezer load of the stuff at the hospital All the medical staff were fantastically kind and supportive as well – even in the dead of night when we would just spend hours looking at her, willing her to get better. I remember our consultant taking my husband in hand and after introducing himself passed the comment that we would be getting to know him very well over the coming years!

On her second day, Katherine had a balloon septostomy and then a BT shunt to increase the amount of blood going to her lungs. She responded brilliantly to the treatment except for suffering an oesophageal tear which resulted in fluid leaking into her lung cavity and kept her ill for quite a long time. But thankfully she did recover, and after nine weeks we came home!

The treatment starts

For the first few years of her life, Katherine was a very small baby and really not very well. At around 15 months, she had to have another heart operation, and although she recovered well initially, did suffer from heart failure after a few days. But after another stint at the hospital, we were finally sent home again and Katherine began to do much better. Before we knew it, she was ready to start school and I spent anxious times fretting over her getting cold, being bumped in the playground (she had started taking warfarin, needing endless blood tests at the hospital), doing gym, etc. But as ever, Katherine showed amazing resilience and had no problems at all.

“Taking her for all the blood tests over the years has been pretty harrowing… there is no reasoning with a terrified, crying child who is begging you not to have it done”

When Katherine was seven and a half, we were faced with the option of yet more surgery. This time it was a very big deal for me, because she was doing so well at school and growing into a little person with her own ideas and thoughts. It seemed total madness to send a ‘perfectly well’ child off for heart surgery. But of course, the treatment would make her better and was inevitable anyway. So we decided to go through with it and again suffered a very torrid time. This time Katherine nearly left us again as her body couldn’t cope with the new changes to her heart. She ended up going into theatre for yet more surgery after which she was incredibly unwell and ‘slept’ for nine days. But she did finally come out of it and hasn’t looked back since! In fact, she seemed to suddenly have a new lease of life and her body went into hyper drive – she started to grow and caught up with her peers and even has pink lips now. People don’t know unless told that there is anything amiss!!!

The ups and downs

Katherine1Despite all the difficulties we’ve been through, I am so grateful for our wonderful daughter, who if she’d been born ten years earlier, probably wouldn’t be here today. It’s just so good to see how well Katherine is doing now, She plays netball in the A team, plays tennis, swims like a fish, skis, water skis…and basically has a go at pretty much anything! Last September she took part in the 5K Women’s Challenge around Hyde Park and raised nearly £1500 for the Brompton Fountain. She did find it hard and we walked, jogged around…but she did it which after all she’s been through, is totally gob smacking!!

“The most difficult thing for me has been going into hospital for the operations – it is a scary experience and afterwards you are sore. The nights on the ward are especially difficult as it is all very noisy with odd, strange noises.

I enjoy sports, socializing, singing …..normal stuff! Although sport at school has always proved a bit of a concern especially because of the warfarin, but also because of getting puffed. But it hasn’t really stopped me doing anything – except cross country!!”



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