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 |
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.
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.
They
are a symbol of strength for the NICU MUM.
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”
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
ReplyDeleteAlthough 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.
ReplyDelete#heart2heart