Great Ormond Street Hospital: beyond belief

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Just walking into Great Ormond Street breaks my heart. So many very poorly children, and so many parents going through tough journeys with their little ones. And those are just the ones who can make it off the wards.

But you’re not hit with a wall of sadness when you walk through those hospital doors. It’s smiles. Smiles from the staff, doctors, nurses, volunteers, receptionists, teachers, children’s support workers, and best of all, smiles from the children themselves.

The hospital has created a haven for poorly children, ensuring their often painful and scary worlds are eased through colour, laughter, and hope.

Flashback to September 2015. Lily was just 6 weeks old when we started noticing a beige line on her eyelid. She wasnt even due yet. I clearly remember sitting on our red living room rug, when the health visitor drew a little line on the eye of a body-map outline printout of a baby. Within weeks it had turned pink, then deep red, then started getting blotchy, lumpy. The deep blue then started growing underneath, and her eyelid started swelling like a water balloon.

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Tumour size at 3 months

My very first baby sensory class, a woman walked straight up to me and asked; “what’s wrong with her eye?” She just came out with it. I was in a bit of shock but also hurt by the way she did that, as if either I’d done something to cause this giant red growth on her face, or as if Lily held some kind of contagious disease that her precious son should be kept away from. She could’ve at least said ‘hi’ first. Particularly as I’m a nervous mum in forced ‘mummy’ groups like that. And I hadn’t even taken off my coat!

Lily has a hemangioma on her eyelid: a ‘tumour of the bloodvessels’. It’s not life threatening, nor cancerous, but at around 3/4 months they were so concerned about the speed it was growing that they believed her developing vision could be affected through the pressure it was putting on her eyeball, and the mere fact she was losing the ability to hold open her eye through the weight of the tumour.

Within just 3 days of the referral, we were on the first of many train rides down to London to reach Great Ormond Street. (Here I need to thank East Midlands Trains for continually being amazing support at Leicester and St Pancras to help us with our journey, despite our heavy pram, hospital bags, and the baby! We are often very tired but you have always made things so much easier for us! Thank you.)

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One of our many train rides to the hospital!

We only needed to enter the doors of the penguin ward before the first; “Hello Lily!” She was known by name, and from that moment every member of staff continually blew our expectations away. It was not like any hospital I’d been to before. They remember you, they know your story, and immediately they refer you to her further tests or other appointments, rather than having to wait for months for referrals. There were concerns for Lily’s heart so they had immediate ECGs and other scans in different departments. An ultrasound on her abdomen revealed potential tumours on her liver, so again we were immediately referred to the correct specialists.

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Sharing a crib on her first overnight stay - 8 weeks old

We were given the contact details of the nurse specialist in case of any questions at all. Being from Leicester this was an incredible luxury, but we never dreamed she’d reply within 20mins on a Sunday, let alone have the ability to contact our consultant and then arrange for an adaption to the medication immediately. She even called us on a bank holiday evening just to check how Lily was doing. It was just beyond incredible.

I remember one visit Lily had some tests in the ophthalmology department where they tested her eyesight and how her brain was getting signals from her eyes. Some of those tests were beyond comprehensible to me, let alone for a tiny 6 month old, with wires attached all over her head, followed by a very challenging series of tests. I cannot tell you how proud I am of how she did that day.

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Brain function tests mixed with Nemo!

To cut a long story short we had day visits, overnight stays, weekly, fortnightly, monthly, up and down to London. We met families on every visit who were at Lily’s clinic each week and it’s amazing how much everyone supports each other. You get to know everyone, and it puts the little ones at ease, just as much as the parents. One little girl on the ward was looking forward to going home for Christmas after having had to spend months in the hospital hotel where she was being put up with her mummy. I cant begin to think of how tough that must be on the family, but she was there smiling, and getting ready to join the hospital school. She was excited, something you rarely see with a little girl who had to have daily drips, tests and medication. It’s the incredible team at GOSH to thank for that.

Lily struggled with some of the medications and reacted badly, and after trialling 4 different medications there was talk of surgery due to how rapidly it was growing. But shortly before Christmas they trialled one last new medication. By the new year we had already seen an immense reduction.

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Starting to improve!

Now, 4 months later, all the swelling under the eyelid has reduced, and the bright red growth above the eyelid has mostly reduced. It’s unbelievable to barely notice it when her eyes are now open, and she is completely oblivious to any of it. When younger she used to catch it with her fingers or it was uncomfortable for her when it got heavy, but now we can’t believe the difference. And it’s the amazing staff at GOSH we have to thank for helping our little girl.

We can’t begin to imagine what size it would be now, or the state of her vision, if she’d had to wait months for referrals, or it wasn’t treated, nor the fast response to changing her medication. We were told she’d be under the hospital for at least 18 months. We are truly hoping at next week’s visit that they will reduce this. We are truly overwhelmed by the hospital, and are so lucky to have had their support.

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One of our earliest hospital stays...

Last week, a little 2-year-old superhero called Elliott was discharged from Great Ormond Street after 420 days in hospital. His family said they miss being able to do normal ‘family’ things, like sit on the sofa together. These are the things we take for granted and it’s a stark reminder of how lucky we are. I can’t begin to imagine what his family have been through, and still will be with his continuing treatment.

Journeys like that of Elliot’s family are just one of the many that GOSH deals with every day. But just seeing the children on the ward who have recently had brain surgery but are happily running around playing as though they’ve just had a band-aid put on their finger, it’s a heartwarming sight in such a heartbreaking environment. Children smiling in the canteen making crafts with the play workers, children who are severely disabled but are transfixed watching the beautiful fish lights in the entrance, children coming out from the hospital school, children who were spending Christmas in hospital making decorations for the ward.

Doctors and nurses, smiling all day, remembering patients by name, and being more than happy to help, despite what difficulties they have to face with these little humans every day.

The work GOSH does for children and their families is just beyond incredible and I hope if anyone has the chance to support the charity then please, please do. Thank you.

Please visit www.gosh.org
to find out more about how you can help.

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3 Comments Add yours

  1. amiecaitlin says:

    She has the happiest, shining eyes! You’re clearly doing something right. So don’t let the rude lady at the mummy group put you off.

    Liked by 1 person

    1. kwillmer says:

      That’s really sweet of you thank you. That’s really made my day as a woman in Tesco just once again said ‘what’s wrong with HIS eye?’… I got quite upset as she’s come so far. Was tempted to say ‘SHE has a shark bite’ to get rid of her 😉

      Like

      1. amiecaitlin says:

        I dare you to say it next time!

        Liked by 1 person

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