At ten days old my son, Nivan, started having gelastic seizures. Commonly known as laughing seizures, these are focal or partial seizures with bouts of uncontrolled laughing or giggling. As first time parents this wasn’t something my husband and I were aware of, so initially we thought he was just crying or laughing. After about ten days of these symptoms, we became worried and decided to take him to our local hospital in Farnborough.
Nivan stayed at Frimley Park Hospital for ten days while the doctors monitored him. They organised an MRI scan which led to him being diagnosed with a Hypothalamic Hamartoma, a rare, non-cancerous brain tumour located on the hypothalamus that causes gelastic seizures. The hypothalamus is located at the base of the brain and controls many of the automatic functions of the brain such as hunger, thirst, temperature and hormone regulation.
After Nivan had been diagnosed, we were transferred to Southampton General Hospital so he could receive specialist treatment. Unfortunately, he then had a large tonic seizure where the body stiffens and the eyes or head turn to one side, which led to him being transferred to an Intensive Care Unit for a few days.
The doctors told us that in order for Nivan’s condition to improve, he would need surgery to remove the tumour from his brain. Finding out that our baby needed brain surgery was devasting and scary, but we stayed strong for our son. After about a month and a half, Nivan was stable enough to be discharged from Southampton General Hospital. We then had to wait a couple of months before he could have surgery. Finally the day arrived in early November and we made the journey to Great Ormond’s Street Hospital (GOSH) in London.
Nivan’s surgery started at around 8am and finished at around 8:30pm, which was an agonising wait for us. Fortunately, the accommodation office at GOSH told us about The Sick Children’s Trust’s free of charge ‘Home from Home’, Guilford Street House. At around 1pm we were given leaflets about the ‘Home from Home’ and received directions to get there.
“It’s overwhelming enough being in an unfamiliar city, let alone when you’re baby is in hospital, so it was reassuring to have one less thing to worry about as we had a place to rest our heads at Guilford Street House.”
We were greeted by the house staff who told us everything about the ‘Home from Home’. The accommodation was just what we needed, and the support the house staff provided was really helpful. I would highly recommend them.
GOSH is approximately 90 minutes from our home via multiple trains, so the thought of doing this journey twice a day while Nivan recovered was incomprehensible. I don’t know what we would have done without The Sick Children’s Trust. London is a new city to me so I had no idea about things like hotels in the surrounding area. It’s overwhelming enough being in an unfamiliar city, let alone when you’re baby is in hospital, so it was reassuring to have one less thing to worry about as we had a place to rest our heads at Guilford Street House.
We felt so lucky to have the ‘Home from Home’ while Nivan was in hospital. Due to COVID-19 restrictions, my husband and I were given a single room and only one of us would stay at a time, while the other was on the ward with Nivan. Guilford Street House was easy for us to get to when returning at night from the hospital and provided a quiet, safe space where we could pray and get some sleep. We didn’t have time to use the house’s cooking facilities but we did make use of the fridge and freezer. I would store pumped milk in the fridge as well as medication for Nivan that the doctors advised us to keep in our accommodation.
When we first arrived at GOSH we didn’t know anything about The Sick Children’s Trust. We were so worried about our baby as well as where we would stay nearby. The thought of leaving Nivan in the hospital broke my heart, so being able to stay so close to him was really valuable to me.
The surgeons said Nivan’s surgery went well as they were able to remove 80% of the tumour. After a week at GOSH, he was discharged, however, three weeks later he started having seizures again. We were told Nivan would need a second operation to remove more of the tumour. The surgeons said it would be best to wait a year after his first operation before his next procedure so we’re now on a waiting list.
Nivan is now 15 months old and developing slowly but steadily. He has monthly appointments at GOSH and Southampton Hospital and is on medication to prevent tonic seizures. He still has gelastic seizures as these cannot be prevented with medication, so hopefully his second surgery will help to reduce these. The tumour impacts his day-to-day life. He’s not walking or talking yet, just making babbling sounds, and he has difficulties drinking water on his own, but we’re getting there. We take him to physio sessions and occupational therapy to help with his development.
Those days while Nivan was receiving treatment at GOSH were difficult for us, but we are so grateful to The Sick Children’s Trust for giving us a comfortable place to stay, just minutes from our baby’s hospital bed.
Sunima Rai, Nivan’s mum