Our Stories – Henrique

Henrique’s condition was no surprise to his mother Andreia, as abnormalities came up during his 20 week scan, but the magnitude of his disabilities set in when he came into the world barely able to breathe or feed.

Henrique is a lively toddler who likes playing with his building blocks and games of hide and seek with his big brother Duarte, who is four. He was born with a cystic hygroma, which is a lymphatic lesion that causes excess fluid and swelling around his neck. He also has brocheo-tracheal malacia, an immaturity of the cartilage in the bronchial tubes and the trachea.

When he was born he needed special care 24 hours a day, seven days a week and was fed via a tube into his stomach. However through all of his disabilities and a long list of procedures and operations, Henrique has barely stopped smiling, and Andreia could not be more proud of him. A consultant at a hospital suggested referring Henrique to a children’s hospice when he was just a few months old.

I asked – why to a hospice? He’s not about to die! Or will our son die soon? At that point I didn’t realise what a hospice could offer, and now I am so thankful that we were referred.

Henrique had come home from hospital traumatised and very sensitive to touch. His first trip to Richard House was for sessions to help him recover from this. These sessions really helped and he went on to have music therapy, which helped him connect with his voice and experience sounds in different ways. “Here was a child who physically couldn’t say anything, but music therapy really worked for him and now he can say a few words.”

Richard House helps us to live our lives as a family and as individuals. When we come here we don’t have to explain ourselves to anyone because the staff know what we are going through. We feel like we can be ourselves here, and we know no one will say ‘what a strange looking child’. Coming to Richard House is just like coming home.

Andreia makes the most of regular pamper sessions that Richard House puts on for mums, where the women are treated to facials, massages and other treats while sharing experiences.

Sometimes it’s easier to relate to people who have been through the stresses of hospitals. We bounce ideas off each other on how to deal with living with a disabled child. You need to rest and keep healthy to look after a child with a disability, so things like this are wonderful.

Henrique’s feeding tube was removed recently and he can now be spoon fed, which is a huge milestone.

We take it day by day – if we didn’t we would go crazy. Richard House has helped us to get back on our feet and give him a better chance in life. We feel positive about the future.

We are delighted to tell you that Henrique can cope so much better now that he no longer needs our services, but he and his family remain firm friends of Richard House.