The Best Worst Place

Recently, I met a fellow neonatal mum face to face. We were introduced by a good mutual friend of ours and had both had daughters on the Tiny Lives unit at the RVI. Our daughters had missed each other by a couple of weeks. Her gorgeous 30-weeker, now 16 months old, was born due to placental abruption. Immediately, it was like we were part of a secret club with a code language. In minutes we swapped procedures, compared stories, established mutual acquaintances on the ward and compared favourite doctors and nurses. 

"It was such a wonderful place."

"So lovely; just incredible."

Our friend, with her term baby, looked at us as if we were mad.

We paused and looked at each other as if we were mad. And quickly looked away, a slight welling of the eye and a lump in the throat.

"A horrible place."

"The worst place to be."

The thing is, both things are true. A good NICU is the best worst place to be. If you're going to be separated from your newborn, you damn well want them to be in the best equipped place with the most high-tech machines and knowledgeable staff yet also with compassion. But of course, even the best NICU, the one with the friendliest nurses and the most intelligent doctors and the newest and sparkliest and beepiest machine is never going to be enough. 

Because it's not with you. 

You can visit, yes. But that is the hitch: you have to leave. Night after night, you have to walk away. Bye bye, baby. Does your child, wired up, know you are leaving? Know the difference between night or day? Know inherently that you should be there, forever and always? That is all debatable. But to you it goes against the very grain of parenthood. It is the strangest thing: you know it is the best place for them. But you also know, that it will always fall short and cheat you both of the most loving and most caring place: being there with you.

Commemorative Quilt

I've talked before about the importance of charities that support neonatal or indeed any hospital unit that can offer vital funds that will enhance the unit beyond the NHS budget and be able to prioritise family support, community care, extra staff training to ensure that knowledge is kept cutting edge and small details that seem insignificant, but to families and in-patients make the difference between a scary stay and bit of a fuzzy glow.

Babies should start their growing up at home with their parent(s) and families. However, for 80,000 babies this isn't the case and they will start their lives in a neonatal unit. Wriggles spent two months there, which although is heart breaking, considering how much longer some children spent, is barely skimming the surface. Too many people think that premature birth or sick children is something that happens to other people. Premature birth counts for 7.8% of the number of live births in the UK and up to 40% of those cases have an undetermined cause. In my city, 6,500 babies are born every year, and 600 from those and from other hospitals around the region and the North of England will pass through the neonatal unit, through intensive care, high dependency and special care. Tiny Lives our charity support the unit, including directly funding breastfeeding support posts raising expressing and breastfeeding to 95% and for two specialist physiotherapists who do vital positioning work which is especially necessary for babies in for extended periods of time. They also focus on family support and allow for items outside of the NHS budget to be purchased. 


To celebrate the marvellous work the unit does and the lives of the babies who have passed through since the unit opened in 1993, a quilt is being made by an events group supporting Tiny Lives. There are 93 squares being personalised by parents and a border of buttons are being sponsored by anyone who wants to support the project and from friends, families and businesses.

 So if you would like to get involved or donate, hop over and have a peek. Including Gift Aid, the total raised currently stands at £1009.18 which can be added to the total monies raised so far from the group which is £11,673.89. Hundreds of other people also raise thousands for Tiny Lives across the North East; having had a experience of special care makes an enormous impact on lives from the babies, parents, friends and family.

No parent ever plans to be on Special Care but when you have no choice, having a first class unit, dedicated team and a supporting charity to ease the financial burden, it makes a hard time much easier.

Text QUIL99 £1 (or any amount you like) to 70070 or visit the Just Giving page and we will sew a button on for you 

 

Neonatal Charities

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.