Accepting support from Brian House Children’s Hospice is the best decision I’ve ever made
Lana is my miracle child. A happy, bubbly child who everyone falls in love with.
At my 20 week pregnancy scan, I was told that I was going to be the mum to a little girl – I was elated. At the same time I also found out that my daughter was poorly – her left lung had not developed properly and her organs were in her chest. At this point no one could tell me the impact or severity of my daughter’s condition.
Lana has Pulmonary Hypertension. In simple terms this means the good and bad blood in her heart and lungs mix, causing hypertension. Lana is completely oxygen dependent and attached to a tank of oxygen 24 hours a day; she is also fed via a tube. At just five days old Lana had a hernia operation. Whilst she was in intensive care I met one of the Brian House staff members who suggested I may benefit from the respite care the hospice could offer.
When Lana reached 8 months old I visited Brian House and started to attend once a week for day care and two nights a month for overnight respite. Lana has been coming for over two years now and during that time has blossomed. Lana loves Brian House, for her Brian House is a chance to be ‘normal’ as she gets to mix with other children like herself.
Brian House is an amazing place, not only for children but for parents too! I have a great relationship with all the staff and I don’t worry about leaving my little girl because I know she has lots of fun, she is being well cared for and all her needs will be met. Likewise if the slightest thing is wrong they will call and let me know.
I am a single mum and there is only one other family friend trained to care for Lana so I really value the respite care. I get a little break from routine preparing Lana’s medication, I get chance to catch up with housework, help my mum who is poorly and meet up with friends. Brian House is my support network.
During her short life Lana has already been in intensive care three times. Last time I was told that they would not resuscitate her, fortunately she pulled through – she is a miracle child! Being told that your child is likely to die isn’t easy to cope with. Brian House staff recognise this and have referred me to pre-bereavement counselling, another service offered to parents.
Lana is never going to get better; her life expectancy is 5 to 7 years old. I know that when the time comes Lana and I will stay in the Butterfly Suite – we’ll be well cared for.
Our life is like a rollercoaster, full of ups and downs, happy times and sad times. I never know what tomorrow will bring and try to make the most of every day. Accepting support from Brian House Children’s Hospice is the best decision I’ve ever made – it is such a special place and I can’t thank them enough for everything they do for us.