The barrier effect


As a NICU Mum, issues that affect the day to day lives of NICU families are something that I almost take personally. I have been through the NICU journey and now after my family graduated the NICU in Sept 2014; I begin to ask what can I do? How can I help other NICU parents and improve the NICU experience for all? I know as just one person I am very unlikely to change government policies, or raise enough money from the NICU Mum store to buy a new Neo Natal Ward. But the one thing I can do is write, is talk, and to raise awareness of these issues and implore people, to share, like, comment, sign and spread awareness. I have signed up to campaign with Bliss over these issues and all I can do is try, and that is exactly what I will continue to do.

The amazing charity Bliss have just released a report, that sadly I was not shocked at reading it. The report can be read at this link, (Families kept apart: barriers to parents’ involvement in their baby’s hospital care). It shows that fewer than one in five hospitals have enough overnight accommodation to cater for NICU parents of critically ill babies. We were in the NICU for 9 days, for 7 of those days I myself was admitted in hospital so was down the corridor from Elijah. I caught a flu bug and went home I was not able to visit him for 2 days and this broke me. In that time, Greg had to make regular trips to the hospital and as he didn’t drive, he got the bus, or paid petrol money for others to drive him, or parking, he would need to eat and although we were provided with some vouchers when I was still in hospital but for those 2 days Greg had to pay for everything. Just to be able to be near our child. Personally this isn’t right, at night when he returned home we were 25 miles away from our baby. They were not able to offer us a flat nearby, as it is on a ‘urgent’, basis. I do understand this, and can empathise, as Elijah wasn’t in a critical condition but he was also in the NICU. There was also a high chance of something happening if not he wouldn’t have been in there. It didn’t matter that we lived 25 miles away and neither of us drove. If something happened I have had no idea how to get to my baby.

For those parents who are in there for the long haul, for those not able to go back to work, to have to drive in from miles away to pay parking why isn’t there more feasible help on hand? Studies have shown that parent bonding and being involved in the care of their baby is beneficial to the baby. So why in that case are parents being kept apart from their babies? When they are at their most vulnerable and need them the most. Why are some hospitals (1/3) charging parking, when at one time or another this was free for NICU parents?  Effectively they are being charged to visit their child. They are likely to be up there for a number of hours and this can cost upwards of £72.00+, each day, for weeks on end when one parent is likely to be unable to work and the running of the house is still needed. Hardly makes sense does it? Hospital food can cost a bomb, we all know that, so it may be some NICU parents who have been in a while will try and save costs and bring their own to have in the kitchen area? Wrong again, the study also shows 40% of NICU’s have limited kitchen facilities.


Elijah in NICU SEPT 2014
 We were in the Norfolk and Norwich NICU, and there is an excellent kitchen facility on offer that can be used, but why this isn’t standard across the board baffles me. Especially if finical assistance isn’t on offer with food vouchers which apparently is 1/3 of hospitals. For the amount of talk that breastfeeding is best… that is increased tenfold with a NICU baby, so why are breastfeeding/ expressing mums not being given the option to be kept hydrated and refuelled by the hospital? They need to be close to their babies, especially to establish breastfeeding, yet once again they are having to pay for this themselves which is likely to be costing around £20-£30 a day. Add that to the parking you could easily be looking at £100 a day easily just to be able to visit and care for your baby.

 

Do you remember old style Mario? Where you have to jump over the obstacles and barriers collect the coins to progress to the next level. I can see some similarities here. There are so many barriers NICU parents are facing. This is not in every hospital, but the fact that it is happening at all is effecting thousands of families. One in eight babies will require a NICU stay it could be for a few hours, it could be for a few months. It is a traumatic experience and one that leaves it mark on the parent. You cannot just go in and hold your baby, to just feed them or change their nappy. You are spending the first hours bonding with your baby in a room with nurses, doctors, machines, lights, noise, and strangers. It is a time where you have a complete loss of control and the nurses will tend to help as best they can but when facilities are limited how much help can they offer? They can point you in the right direction, but this is when you will likely find a big barrier to get over; financial assistance, overnight accommodation, counselling you will find is a complete postcode lottery.

 

I myself experienced some this, when I was not made aware of the fact there were such things as peer to peer support workers to help you, milk banks for those like me who couldn’t breastfeed, and not be able to source overnight accommodation and having to return home. However, if I had my baby in Ipswich which is roughly 50 miles away I could have had access to the majority of these things. Who knows this may have prevented being diagnosed with PTSD. It shouldn’t be like this, it shouldn’t matter what hospital you gave birth in, what day your baby was admitted too, the care and facilities for NICU parents should be the same throughout the country. It really is one of the worst times of your life being helpless and standing by while your baby is hooked up to god knows what and all you want to do is pick them up, run and take them home but you can’t. Why is the mental health of the NICU parent suffering because of the location you gave birth in? Why are NICU parent’s facing extreme measures to be able to pay to visit their child? Why should they have to pay at all? But ultimately, why are so many barriers being put up to those which are going through this difficult journey? When like everyone else they just want to look after their child.


 
Bliss, are doing an amazing job at recognising what is needed, and doing what they can to make it happen. They truly have the NICU parent’s interests at heart. One thing we can all do, even if you are not a NICU parent is sign this petition to campaign for parents and babies to stay together whilst they are in NICU, (all the hard work has been done for you) that will go to your MP; click here to take action!

 

Imagine how you would feel being kept from your baby? When they need you most, but you cannot stay by their side which is what your body and heart are begging you to do, instead you have to leave and travel home. Spending the time willing the hours away until you can go back and see your baby again and praying nothing happens in the meantime. No parent should be kept from their child, especially when they are in NICU, so please like, share, comment, sign lets the get word out and keep NICU parents where they belong, by the side of their baby.

 

Show your support for a NICU MUM by wearing a NICU MUM bracelet/ badge, or if you just love the blog and want to help spread the NICU MUM message.

They make a great gift for anyone who is going through the NICU journey and to show you are thinking of them.

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10% from each one will go to Bliss charity.

Vicki Moore and The Honest Confessions of a NICU Mum Blog are proud to support Bliss, the special care baby charity and we make regular donations to support babies in the UK who are premature or sick. To find out more about Bliss please visit bliss.org.uk

 

Comments

  1. Vicki, this is such an important thing to raise awareness of and it is awful that there can be such a huge barrier in the way of NICU parents being able to be with their baby/babies. It makes me realise how incredibly lucky I was to be able to stay in Ronald McDonald accommodation just across the corridor from PICU - we had limited kitchen facilities, but at least we had them - and a substantial discount on food and parking (I think the parking was around £7 a week). I never knew that there were so many hospitals that can't even provide this to parents. To be separated from your baby and miles away from them must be the hardest thing in the world when they are in NICU - I found it hard enough the two nights I was in a separate hospital but I was less than 5 minutes away, not many miles. I have emailed my MP and hope that BLISS's campaign will help to increase the amount of accommodation and support available for NICU parents. Thank you for helping to raise awareness of it and for sharing this with #hearttoheartlinky

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  2. Although I'm not an NICU parent, I am the parent of a child who spends a lot of time in Hospital. We live in Anglesey North Wales but Martha is treated at Great Ormond Street because Alder Hey (which is considerably closer to home) couldn't offer us the treatment we wanted for Martha. It was 100% our choice, it doesn't make it any easier. Train journeys back and forth for her appointments, having to bring her siblings to visit while she's admitted for surgery. Keeping myself and my husband fed and watered while we are down there, three meals a day...it's expensive. I'll be signing the petition.
    #heart2heart

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