It was the scariest time of my life when my daughter was rushed to Great Ormond Street Hospital (GOSH) for emergency brain surgery. Having a room at Guilford Street House gave me the privacy I needed.
My ten year old daughter, Natania, woke me up in the middle of the night complaining that she had a really bad headache and couldn’t sleep. I gave her some Calpol to help ease the pain and within 30 minutes she was already starting to feel better. We went back to sleep and I stayed with her throughout the night in case it got worse again. When we woke up, Natania said her headache had gone and she was feeling a lot better. That was until she tried to stand up. She lost her balance and was struggling to move properly, with the left side of her body particularly becoming stiff with lack of movement. I took her straight to our local hospital in Enfield and after some tests and scans the doctors found that there was pressure on her brain and told me she needed emergency surgery to relieve it. We were rushed over to GOSH for the procedure but the doctors couldn’t tell me exactly what was causing the pressure, just that their initial suspicion was that it was a tumour.
When we arrived at GOSH there was no time for any further tests and Natania was rushed straight into emergency surgery. It was the scariest moment of my life as I had no idea what was wrong with her or if she would even survive. I was sitting in the parents’ room, with multiple people who were going through their own situation, just hoping she would be ok. This was when a nurse told me I had a room at The Sick Children’s Trust’s ‘Home from Home’ Guilford Street House. They told me it was located just minutes away from the hospital. It was so important to me in that moment to have somewhere else to go. I had my own room where I could stay for as long as I needed close to the hospital, but it also gave me a place where I could privately process everything that was happening.
“The ‘Homes from Home’ aren’t just a place where you can sleep it’s a place where you can speak to people, get support and advice.”
It turned out to be a haemorrhage that was causing the pressure in Natania’s brain and the doctors were able to remove the clot and clear the affected area. The surgery went well and Natania spent four days in the Intensive Care Unit (ICU) under close observations. She slept for three days after the operation and when she came round she couldn’t move her left side at all. There were some concerns in case this was permanent, but we needed to wait until she had recovered more and gained some strength before this could be fully tested. In the first few days after the surgery she was also struggling with her memory and she would forget having conversations with me. Thankfully as she got better both her movement and memory returned to normal.
Natania spent a week and a half in hospital and for the first week I stayed at Guilford Street House. I really appreciated having space where I could be on my own to sit silently and process everything. It was amazing to have that room away from the busyness of the hospital. My partner stayed at home to look after our other children and could only visit the hospital for short periods of time before returning home. It helped to be able to speak to other parents who were staying at the ‘Home from Home’ so we could comfort each other and talk through our experiences, giving me some extra support. It was hard for me at the beginning as I really had no idea what was making Natania so unwell at the time so when the other parents or my family asked there really wasn’t anything for me to tell them, but I really appreciated them trying to help. The staff are also amazing and it is an excellent service they provide. I don’t know how to thank them for their support as they really comforted me. The ‘Homes from Home’ aren’t just a place where you can sleep it’s a place where you can speak to people, get support and advice.
As Natania got better she was moved out of the ICU and onto the wards where I could stay with her by her bedside so I left Guilford Street House so another family could benefit from staying there. Two months on and Natania is doing fine. She still has the occasional headache and she isn’t allowed to do any exercise at the moment while she continues to recover from the after effects of the surgery. She can find this quite frustrating at times, but she knows how important it is for her to be careful and how lucky she is to still be able to walk and have no problems with her speech. She has come so far and needs to continue to look after herself. She is on medication to help prevent the blood clots from forming again and to hopefully prevent her from having any seizures. She is still being called in for further tests to see if she is likely to have the clots again and Natania will also be having a more thorough assessment soon as she has another abnormal vein in her brain which needs to be monitored in case it causes another clot. The doctors have said this might have been caused by the previous clot and the invasive surgery but it will hopefully calm down on its own. For now though, we need to keep monitoring it.
Evarine Ssebugwakid, Natania’s mum.
