Rainbow House in London became our ‘Home from Home’ for 40 days last October when our, then seven and a half month old son, Emanuele, had to have two operations at Great Ormond Street Hospital (GOSH).
Emanuele was born in our home country of Italy on February 23 2011 with an oesophagus atresia – a congenital medical condition which affects the alimentary tract, causing the oesophagus to end in a blind-ended pouch rather than connecting normally to the stomach. The doctor told us that only one baby in every 3000 births is born with this and would need to have surgery to try and rectify the problems.
He was operated first in Milan, Italy in June but unfortunately this wasn’t successful and to add more worry to our already concerned minds he then suffered from vocal chords palsy and in August 2011 it became clear he wasn’t able to breathe on his own anymore.
He just appeared to be getting worse and worse so after a long period in the intensive care unit in Italy, the doctors decided to move him to GOSH in London. Whilst there he underwent a gastric transposition to join his stomach directly with the upper end of the oesophagus and a tracheostomy (a tube in his neck) to allow him to breathe below the vocal chords.
During this time, my family and I stayed at Rainbow House, The Sick Children’s Trust’s free accommodation that supports families of sick children whilst they are being treated in hospital.
Just being at the house helped us so much. Not living in the UK we were unfamiliar with the city of London but as we were so close to the hospital we haven’t had to negotiate the transport systems to travel across town to visit Emanuele; it’s been so easy for us to reach him anytime of the day. Both my husband and I believe that even though he was still tiny, he would feel that we were both there alongside his bedside when we could be, supporting and caring for him, and it would help boost his recovery.
Furthermore, for us as a couple, being in the house meant we had the opportunity to get to know other families and to share with them time and emotions. We used to have dinner all together after a tough day at GOSH: every one cooked and shared food. It was a nice time to rest and relax a little and it was been a big support to share worries, hopes and some moment away from the wards.
As a mum of two other children who were just nine and five years old also, being in the house was a god send. When we spoke to Sandra, the House Manager, about having our two other children come and stay with us, she was so kind and even moved us into a bigger room with a spare bed. They were so desperate to come over and see their little brother and after many months apart staying with their grandfather to spend a week together as a family was very important – it gives you such a boost emotionally to have your entire family around you during tough times.
When our children did come and visit, they came with my father-in-law. We had the chance to spend some time together in Rainbow House and it helped very much because it was like staying at home, eating, playing, watching TV – just the normal things families do which you sometimes take for granted.
We returned to Italy in mid November and Emanuele is getting better and better every day. He is still fed by a jejunostomy which is a little tube in his intestine and breathes through a tracheostomy but he’s improving and recovering very fast. We are supposed to get back in GOSH in four months for his first check up and it’s reassuring to know that if we have to stay over we can once again turn to The Sick Children’s Trust to help support us.
Elisa Rossi, Emanuele’s mum.
