Family experiences

Share your story

It is the experience of families that is the most important part of the Better at Home Campaign so we would love to hear from any parent or carer wishing to share their story - to get involved email campaign@wellchild.org.uk with your name and contact number or call Helen on 0845 458 8171.

 

 

Finnley's story

Following a routine scan during pregnancy, Vicky was told that her baby may have bladder and kidney problems but she had no idea about the amount of time that her son Finnley would spend in hospital over the next few years.

Despite appearing healthy when he was born, Finnley became very unwell with severe constipation and vomiting when he was just three months old and was admitted to hospital as an emergency. Tests eventually diagnosed that he had severe intestinal obstruction and an enlarged bladder. This was the beginning of a very long and frightening stay in hospital for Finnley and Vicky. Finnley was unable to eat and was fed solely through a tube and at the age of six months he weighed less than he did at birth!

Eventually with treatment, Finnley’s condition began to improve, small milk feeds were introduced to his diet and preparations were made for his discharge. At home, Finnley requires a daily regime of medication and tube feeding and Vicky and her partner Jason have both received training in how to set up feeds, care for his catheter and also give intravenous antibiotics.

Long periods in hospital present lots of challenges for the family with Vicky and Jason constantly trying to balance being at the hospital with Finnley and manage their home life.

 

Vicky said: “People don’t appreciate that home life goes on even when your child is sick in hospital, even things like feeding pets still need to be dealt with.”  

Vicky says that Finnley copes so much better at home, in hospital he gets frustrated as he is often bed bound and misses his home comforts. Due to Vicky’s determination to learn the skills to care for her son at home, Finnley’s hospital stays are much less frequent and generally shorter. Keeping Finnley out of hospital is essential for the whole family; it means that his younger brother Lewis gets some consistency having his mum around. Vicky says that when she is in hospital with Finnley, Lewis senses that something is wrong and stops eating.

Finnley may need a full bowel transplant at some point in the future but at the moment he is making good progress and is now able to attend mainstream school with extra support.

Charley-Ann's story

When Charley-Ann was admitted to her local hospital at the age of 22 months her parents, Tammy and Pete, had no idea that it would take over 4 years before she would come home again.

Charley-Ann had been unwell for a couple of weeks and was admitted to hospital when her condition suddenly worsened. Doctors were unable to find out what was causing her symptoms, so she was transferred to a large children’s hospital where further tests showed that she had a number of lesions on her brain. Charley-Ann was admitted to intensive care where she was put on a ventilator and started on a long course of antibiotics and other medication. After some time, the doctors tried to take her off the ventilator but it became clear that this was not going to be possible and that she would have to stay on the ventilator for the long-term.

The plan to get Charley-Ann home from hospital took a long time because of the number of people involved in her care and the need to make sure that her home environment was suitable. All the carers she needed, including Tammy and Pete, had to be specially trained in how to use the ventilator and manage her tracheostomy. Charley-Ann was finally discharged from hospital in the summer of 2007, once it had been established that her complex care needs could be met at home.

With the hospital being over an hour away from home,Tammy had stayed with Charley-Ann throughout her time as an in-patient. Living away from the rest of her family was a huge strain on everyone, especially for Charley-Ann's brother, who had to adapt very quickly to not having his mum around. Families of children requiring long-term hospital care can become fractured, so Tammy, Pete and the children had to learn to live together again following Charley-Ann's discharge.

Now 7 years old, Charley-Ann continues to be cared for at home in a familiar environment by people she knows and trusts. Despite her ongoing need for 24-hour care, everyone is delighted that the family has now been re-united.