As well as large and vital charities like Bliss among others, many neonatal units up and down the country have their own smaller charity attached that supports both the unit itself paying for medical equipment ontop of the NHS budget to ensure the units remain cutting edge, contributing to research projects, looking after parent and family welfare, paying for extra staff and providing support for the families be they in for a day or 6 months.
My local neonatal unit is at the Royal Victoria Infirmary, Newcastle-upon-Tyne. Ward 35 houses the intensive care, high dependency and special care rooms that make up the unit. It cares for over 600 babies a year born anywhere in the Northern region and at any one time can take 34 babies. It is one of the bigger units in the UK and last year, won the Big Heart (by Mother & Baby magazine and Bliss) award for Neonatal Unit of the Year; not a prize taken lightly when you think of all the fantastic units that save lives every single day. It is by sheer luck that it is my local unit. After university, I applied for jobs liberally and it just so happened my first offer was in my university town of Newcastle so there I stayed in a city suburb, before my daughter came along very prematurely in a matter of a few months. Because of the size of the unit and the specialist Intensive Care it provides, it meant we did not have to be transferred, potentially many, many miles away like many families. Equally because of the size of the unit, it meant that we got to stay in the same unit throughout our care meaning that when Wriggles progressed or took steps backwards, we were literally just down the corridor in transferring the incubator or cot. Neonatal transfers are one of the big heartbreaks of special care and happen all too commonly; sometimes from necessity for higher levels of care and sometimes for lack of bed space. Neonatal medicine is so precise that these vulnerable beings sometimes need to be transported to another region completely to be assessed correctly and cared for. Leanna, over at Diary of a Premmy Mum has written about this sorry state here.
Charities attached to units can be brilliant at offering support to families either far from home or nearby. The units are incredible at caring for babies, but often simply have neither the budget, time nor resources for the families who come with them. The staff are understandably too busy caring for sick babies to upkeep a parents room or sort out car park permits or accommodation or keep sakes. I can only write about my experience staying in one unit, but it has only been upon leaving the whirlwind that is special care, that I am truly grateful for our supporting charity Tiny Lives and how it influenced our stay.
Tiny Lives, supporting Ward 35 at the RVI which also houses the Great North Children's Hospital is the local charity that aims to make each journey a little easier for the families. The money they raise covers many different things, from providing support to enable to staff on the unit to attend regular conferences and training to stay on the cutting edge of leading care for premature and sick babies to looking after the families, some who pass through quickly and some who are in for the long haul; some local and some very far away. Some of the things that we were lucky to be direct recipients were:
- A Memory box.
Such a small thing, but now a year plus down the line means such a lot. Each baby was given a memory box, a kangaroo toy and a diary to fill in of their stay for the parents or carers to keep. They also were given a handmade card with inkless prints of their child's hand and foot prints as soon as the child was stable enough for these to be captured. Although Wriggles was in an extremely critical position for 48 hours, they took these prints within 12 hours to give to me which I treasure very much now. The memory box houses things like the first size nappy she wore, a premature blood-pressure cuff, the tiny dummy she used to improve her suck reflex, our hospital bands and the photograph I slept with every night until she came home. The diary, filled in by me and the staff, charts simple things like coming off IV fluids, having eye tests and feed volumes from nasogasteric to oral. Tiny things which were momentous at the time and I am glad I still have to remember. In a fire or emergency, this box is the one physical thing I would save for me.
- A Development Physiotherapist.
Due to the funding from Tiny Lives, our unit was able to have a dedicated highly skilled physiotherapist who specialised in neonates to ensure that even the sickest and smallest babies were benefiting from positioning to promote positive development, health, growth, comfort and opening of the airways. Her input was essential and she would draw up individual care plans for each baby and talk the parents through exercises to do and show detailed positioning. Although the nurses did not always have the time to adhere religiously to this, especially if an infection or recurrent apnoea meant that other care had to be prioritised, having this information was vital in giving Wriggles and other babies a head start. It also meant that on discharge, we were already in the system, so to speak, for receiving further help especially with physiotherapy. The subsequent help we have received has been outstanding. - Funding towards research.
The doctors and nurses at our unit regularly travelled to conventions, lectures and conferences on neonatal health looking at all aspects of improving and progressing care. To give the nurses a chance to attend some events, there was a lottery system whereby each year two nurses were chosen to attend one of the larger international events and they would then present the key points to their colleagues to ensure that everyone was as up to date as they could be to make sure the best outcomes were possible. When we were in, two nurses we saw regularly were preparing to go to South Africa for the International Neonatal Nursing Conference. There were also several research trials ongoing on the unit ranging from accurate of fat:muscle ratio in neonates, nutrition and how it affects diet, health and bone density and use of iodine and if it improves thyroid and cognitive function. We took part in all three trials and I am keen to read the results when published. - Financial help with expenses attached to NICU.
The fund helped parents pay travel expenses, whether purchasing public transport travel passes or long term car park permits or both. It also would help, in conjunction with the Sick Children's Trust to find accommodation as near as possible for families, and either free or very low cost. These can all be vital as many people easily forget the financial burden on families, especially those who have extended stays in hospitals. Of course there are ways of cost cutting, but even so, you can leave with a hefty and unforeseen bill. - Family Support
Emotional and mental support. From personal care and being linked up with a buddy to share the highs and lows and turn to for advice and understanding, to parent's rooms full of information and a calm environment to reflect. As units have strict visitor policies this also acted as a good space to wait, without having to leave the ward. Family support can be so important in not feeling isolated and in gaining confidence which inevitably can be damaged having a very sick child. We were not present over a special holiday, but they do try and arrange things for Christmas and other special occasions for families who are still there. When we were in a paediatric ward with support months later, on Easter Wriggles (and I) received an Easter egg and teddy bear that looks suspiciously like a lion cub and at Mother's Day I was given a hand-drawn card. Such gifts, so small, can mean such a lot.
We were in Edinburgh and the unit was fab. I always try and donate at least something small each year to say thank you.
ReplyDeleteThe memory box sounds a great idea with the diary.I have recently suggested they have a nicu specific babybook for sale with all the milestones relevant for premature baby,like first wear clothes,breathe on own etc. They have a separate charity that supplies memory boxes but only for the ones who don't make it home.
They have a great website where the nurses upload photos of your wee one and family (or you,if far away) can log in and keep track of progress. I can give u link if u want.
What a great post. Although bliss are great we need to remember the smaller charities too!