We never expected to have a premature baby. We hadn’t budgeted for it!
Working in the NHS has allowed me to meet patients and families of all ages, backgrounds and beliefs. I have worked in a special care baby unit (SCBU) and spoken to parents who have told me of the whirlwind of emotions that sweeps through them when their 27 week pregnancy all of a sudden becomes a 27 week premature baby.
There are so many emotions to contend with.
You want and need to know that your baby will be okay, all your previous stresses go out of the window and your focus is completely on your child.
Of course, your gorgeous new baby could be full term but still be unwell and need special care or neonatal intensive care. The vast majority of the emotions spoken about above still apply, as does much of the information contained within this post. If you’re a parent of a unwell baby of any gestation, I hope you find this post useful!
Read on to learn how to afford a premature baby
The birth of a premature baby is a huge event for a family. Just looking at the money-side, the charity Bliss states that the average additional cost, to the family, of having a premature baby spend time on neonatal intensive care (NICU) is £2256. For some families with babies spending months on NICU this can be even higher. This is extra to the costs of having a baby in the first place.
This post can’t solve all the problems associated with a premature delivery in your family. However, by reading through and following our action steps, you will however be better placed to understand the financial implications and be able to put yourself in a good position to manage the money-side as you care for your newborn.
By reading this post to the end you will learn:
- Parental leave and pay for parents of premature babies
- When does the maternity or paternity leave start?
- What about our other children?
- How to keep busy with a premature baby in NICU
- Visiting our premature baby (travel and parking)
- What about accommodation for parents of babies in NICU?
- Hidden costs you don’t think about
- What legal things do you need to do?
- What happens to your finances if you lose your baby?
- Statistics about premature births
- Where can I find sources of help?
- Money Questons to ask your NICU nurse
How common are premature babies?
Premature babies are common
The definition of preterm birth is a delivery that occurs before 37 weeks. Of course there is a whole spectrum right from 24 weeks and earlier to term.
The fantastic charity Tommy’s, which funds research into miscarriage, still birth and premature births, quotes some statistics on how common premature deliveries are:
Globally more than 1 in 10 pregnancies deliver early.
Over 60,000 pregnancies deliver early in the UK
Their website also talks about the rates of complications and the numbers of babies who don’t survive as well. These statistics can be frightening when you first look into them, and should be taken as one of many pieces of information to inform you of where you and your family stand. Talking to the healthcare professionals looking after your baby is the best source of information.
Our Mum Laura has had a baby at 31 weeks. What financial problems will she face?
Laura is 19 and is about to become a parent.
She has her partner and baby’s dad, Liam to support her. Liam is employed in a shop.
Laura is unemployed. She’s been trying to find work but had no luck when she was pregnant and now the due date is approaching.
Her parents have died. She has no siblings. She has a couple of close friends who she confides in. She is in receipt of Universal Credit.
Laura and Liam live month to month. They have no emergency fund, but thankfully are not in debt. They rent a council flat together.
Laura is 31 weeks pregnant. Admitted to a hospital 25 miles from home in labour. She delivers her daughter Baby Lia who weighs 2lbs. Lia has breathing difficulty and is treated for an infection, as well as being so small and needing an incubator. Lia is very poorly and the doctors and nurses have said there’s a chance she may not survive. Even if she makes it through all the problems, she has at least 6 or 7 weeks of NICU and SCBU care to look forward to.
As you work your way through this post, try and think about how each point would affect your situation, or try and imagine how Laura, Liam and Lia would manage.
Unfortunately there is no extra leave or pay for parents of premature babies
Astonishingly there is no extra maternity or paternity leave or pay for parents of a baby born at 24 weeks compared to a family with a term baby. If you were to deliver at 24 weeks, you would have already used 4 months of your 9.5 months maternity pay when they reach their due date.
There has been campaigning from Bliss and other groups for parents to receive an extra week of paid parental leave for each week their baby spends in neonatal intensive care. Most fathers/partners who have a baby in NICU have to go back to work whilst their baby is still there, or take unpaid leave.
Unfortunately the government has elected not to publish the findings of a recent review into the provision of parental leave for those parents with premature and sick babies. Charities and some MPs are trying to put pressure on the government on this but as of the summer of 2019, there seems to be too much Brexit and Tory leadership nonsense going on for anyone to spend time on things that really matter, especially if the report findings warrant action.
At the moment the amount of parental leave Mams and Dads can take is the same as that of a pregnancy going to term.
If you’re not ready to go back to work after your leave has elapsed, you should be entitled to claim sick leave. This can be a complex subject and is tackled in detail by Maternity Action here.
Update July 2019
Just before she’s leaving office, Theresa May has announced a review into the provision of parental leave for families with unwell or preterm infants. The suggestion has been made of providing an extra week of paid maternity leave for every week a baby spends in hospital. This is what Bliss have been campaigning for. We hope the government will finalise these plans, despite the Brexit paralysis that’s going on!
How does my maternity leave start? This can have big financial implications
As we’ve just discussed, you’re entitled to the same rights as those parents whose pregnancies go to term, though no extra leave or pay.
You need to tell your employer (or JobCentre Plus if you aren’t employed) as soon as possible after the birth if you deliver early. Whereas normally maternity leave can start anytime after 11 weeks pre due date, it starts immediately if you deliver before then, (or if you’re diagnosed with a pregnancy related illness in the last 4 weeks).
Some women deliver before the 11 weeks to go mark, and some even before the 15 weeks to go mark (which is when you’re meant to have told your employer that you’re expecting). If this is the case you simply need to inform them that you have given birth and that you need to take maternity leave and pay. You’ll need to give them either your MAT1B certificate if you have it, or other proof of the birth (eg doctors letter).
What do we do about work now we have a premature baby? What about our income?
Your maternity leave has begun with a thud. Your beautiful new baby is two weeks old and still in NICU/SCBU for the foreseeable future and Dad’s paternity leave (using this conventional family structure as the example) has elapsed.
What does Dad do?
- Does he go back to work and miss a lot of the visiting time?
- Is he employed or does he work for himself?
- How understanding is his boss?
- Can mum and dad split their parental leave?
- How much is missing another chunk of time going to cost him and the family?
- Is this a busy or quiet time of the year at work?
- What rights does he have?
- How big is the family’s emergency fund?
- Will everything at work carry on without him?
- Can he drive? How far is work from the hopsital?
- Can some short notice holiday/annual leave be taken?
The answers to all these questions will form the decision on what to do. You can read our posts on parental leave to gain more information too.
Dad, if you’re employed then approach your boss and see what he or she says. If they’re the understanding type they’ll know this was an unforeseen circumstance. If you expect they’ll be difficult about it then read up on your rights and write down what options you have. This will better inform your conversation about it.
If you’re self employed the above questions become even more important in deciding what to do. You can review decisions you make as time goes on and you get a better idea of how things are likely to progress.
We have a post on paternity leave coming soon. Keep an eye out on our Facebook, Twitter and Instagram accounts.
Looking after your other children with a premature baby
One of the big factors determining how well parents manage financially with a premature birth is whether they already have children. Juggling school pick ups, ferrying them to and from childcare and taking them to visit your newborn are all necessities.
If they’re older you also might have the problem of deciding how much to tell them about their new sibling’s health, especially if there are bumps in the road.
We have a whole series of posts coming soon on the subject of childcare. We talk about having a general childcare plan and an emergency childcare plan. We’ve created free templates that you can download, print and use straight away. If your new baby is born early, please check out our information on the available childcare options and downloadable childcare plans. Having it all written down in front of you really helps.
If all of a sudden, you’re spending a big chunk of time in a new place, visiting your young son or daughter, and you have kids already, you will need extra childcare.
Often it’s the grandparents that absorb this extra need, although this isn’t an option for everyone. What if you don’t have loving and available parents of your own to help? What if you have kids and don’t have a partner to share the problems with? We have lots of content specifically for single parents coming up soon, please check in with us regularly for updates.
In the event that your baby is really sick, and all your attention is devoted to their bedside, could a trusted family member or friend take your other child(ren) to stay at their home for a few days?
Who is your emergency childcare contact? Is it a friend, family member or professional childminder?
In any case, even if you have your own parents to help and have nearby friends available for emergencies, you’re probably going to be spending more money on looking after your older children than you were doing before, or planning to be spending pre-delivery. This will come in the form of more actual childcare fees, more travelling to and from home-childcare-hospital-childcare-back home, more food bought out of the house and just from the general disruption the family is experiencing at the time.
- Read through our posts on Childcare and Parental Leave.
- Assess which options are available to you
- Speak openly and frankly with any close family or friends and ask explicitly for their help
- I hope the free Childcare plan and Parental Leave Plan that we have available will help you keep things sorted in your head. You can download them from our homepage.
Remember – While you’re entitled to 52 weeks of leave, maternity pay only lasts 39 of those 52 weeks, so if you take the full year, 13 weeks of it is unpaid. With a premature baby, these times will seem to elapse even quicker!
How to keep busy with a premature baby (without spending lots of money)
NICU and SCBU can be super stressful and everything can happen at once. It’s often said babies just eat, sleep and poo. Premature babies are no different.
There’s a lot of time spent sitting by their bed or incubator. That’s also a lot of time going over and over things in your head until you convince yourself that your world is ending and you can’t cope. It’s so important to keep occupied.
Reading books or listening to audiobooks is a common strategy. You can try to lose yourself in fiction or a biography, but of course you may find yourself reading the words and not taking any of it in.
Some units still have the rule of not taking mobiles in but many have decided this isn’t necessary nowadays.
Another trap new parents fall into is becoming isolated. It’s so much harder if your family circle is small. When you’ve got a new baby, let alone a premature baby in hospital, it’s hard to arrange to see friends.
Seeing your friends on a semi-regular basis is invaluable for your well being and mental health. It’s hard to look after your baby if you’re not looking after yourself. I know this is often hard.
Invite your friends over once you’re back at home. They can meet your new son or daughter, be a source of advice, swaps or even childcare and of course be just another person to talk to.
The doctors’ morning ward round is a good opportunity to take time to meet someone, say in the coffee shop across the road from the hospital.
Visiting our premature baby – Travel and Parking
The last thing a premature baby needs is for his or her family to be thrust into poverty due to 8 weeks of paying expensive transport costs or extortionate parking charges.
In England, hospital parking is a complete disgrace. It costs a fortune, especially if you’re attending the place on a daily basis.
In Scotland and Wales, hospital parking is free. (There may be some privately run car parks near the hospitals that do charge). Often exorbitant charges still exist in England and Northern Ireland.
Some NICU/SCBUs have arrangements in place for discounted or even free parking for parents of their patients.
My local hospital has a weekly pass for £10 which is pretty good compared to other sites. Another local hospital near my house was hit by scandal two years ago when it scrapped free parking for parents of seriously ill children. Wherever you live your best bet is to speak to the nursing staff in your baby’s unit and ask for their advice. Some places may have helpful schemes and others won’t.
In Newcastle there is a large hospital called the RVI. It’s brilliant neonatal unit has its own website. It has a helpful page on the help available with transport here. They give out a parking permit to parents of children on their unit regardless of circumstances. This illustrates what sort of things may be available.
They also set out information on the NHS Healthcare Travel Costs Scheme. This allows those on low incomes or in receipt of benefits to claim back reasonable travel expenses. You can learn more information here.
You need to be receiving a qualifying benefit. Reading the website, you could come away with the impression that you’re not eligible to claim it when you’re visiting a family member in hospital. However parents of unwell children who would be otherwise eligible can still claim.
If you live in an urbanised area there may be transport alternatives that might be available to you. We live near Newcastle and Sunderland. This means we have access to the metro system. Rather than driving and parking every day we would have the option of buying a monthly metro pass and taking this route to the hospital. We could also buy a bus pass and take this route. However the car is almost always going to be the quickest and most convenient method of travelling to your baby’s bedside, making this route financially difficult for families is just plan wrong.
For parents on low incomes or who are in receipt of benefits, there may be more help available to cover the costs of public transport or fuel to get to hospital.
- If you’re on a low income or in receipt of benefits, look at the NHS Healthcare Travel Costs Scheme
- In order to learn how much help is available and to actually access it, you need to speak to the nursing staff in the NICU/SCBU.
- Ask your NICU/SCBU nurse if they can sign or authorise your claim form for this scheme.
- Investigate whether public transport could be an alternative option to visit the hospital (eg a monthly bus pass).
Accommodation for parents visiting their premature baby
Once you’re premature baby is reaching term, if there are no further medical problems, preparations begin for you to take them home. Clearly this is an exciting and scary time. They’ve been so fragile in their incubator, with teams of doctors and nurses looking after them since the moment they were born. Now they’re your responsibility.
In my local neonatal unit there is a room for parents to stay and look after their special care baby just prior to going home. This is usually for babies who’ve had a lot of medical need on the unit.
There isn’t normally accommodation for parents of all babies on NICU/SCBU for any extended time. Some mothers are unwell themselves and might be admitted to the postnatal ward. Some parents who have unwell babies resident in hospitals far from their home end up staying in a hotel during this time. This expense can quickly mount up. Many parents end up staying on the sofas of friends who live closer to the hospital, but this isn’t a sustainable situation for several weeks.
Bliss have been campaigning over recent years for better accommodation for parents of critically ill babies. Their research shows that fewer than 1 in 5 NICUs have enough overnight rooms for parents of critically ill babies.
I totally agree with Bliss that the lack of accommodation for the parents of these babies prevents hugely important care interventions like skin-to-skin care, breastfeeding and comfort holding.
You can check out Bliss’ page on this here. They have information specific to each country in the UK.
Despite the national provision for these services being poorer than what is required, some units do have accommodation so it is worth asking your nurse if anything is available.
How to afford a premature baby – hidden and overlooked costs
Travelling in and out of hospital every day can lead to regular small purchases that you wouldn’t often make. Hospital food for example. It’s quite easy to visit your baby every day for 2 weeks, eating nothing but a sausage roll for breakfast, a hospital canteen meal for lunch and a newsagent meal deal for tea. These mount up big time between two parents and are less than healthy too.
The solution you need is a large quantity of cheap, healthy, tasty food. How is that going to happen?
From solely a money point of view it really pays for one parent (or a lovely friend or family member who wants to help!) to spend a couple of hours making a big batch of food. Of course many parents struggle to fit in time to meal prep when they want to be at the hospital.
Don’t forget to access the available financial help
With all the emotional upheaval that comes with a premature delivery and care on the NICU or special care unit, it’s easy to forget to fill out applications for financial help for new parents. Don’t worry too much if you’ve left it a little late, most can be backdated up to a couple of months.
The main schemes to sign up for are:
You need to register for a change in circumstances on your universal credit account when you’re pregnant and when your baby is born. You can do this on your Universal Credit Account page here.
This is one of the benefits that is not being superseded by universal credit.
Child benefit is available to parents of all children up to age 16 (and up to 20 if the child is in full time education or training).
There is no limit to the number of children for which you can claim child benefit. If you’re a couple, only one of you can claim for a particular child.
The claim for your first child is worth £20.70 per week and for each subsequent child the claim is worth £13.70 per week. It is usually paid every 4 weeks.
The paperwork should be given to you by the hospital when you and your baby are discharged (Otherwise you can download the forms here).
It takes up to 12 weeks for child benefit claims to go through fully. The money is then backdated.
Note if Mam or Dad earns more than £50,000 you will be hit with the ‘High Income Child Benefit Charge’ which will claim the child benefit money back in tax. All of it will be claimed back if you earn over £60,000.
Surestart maternity grant
You may able to apply for a SureStart Maternity Grant worth £500! You don’t have to pay this money back and it doesn’t affect your other benefits.
You can apply if you are pregnant with your first child or are pregnant with twins (whether it’s your first pregnancy or not)….and are receiving qualifying benefits.
There’s a separate scheme called the Pregnancy baby payment in Scotland).
Don’t forget the legal things you need to do
You’ve got enough on your plate without worrying about forms and paperwork. Most parents sort these tasks when their baby gets home but if your son or daughter is premature and resident in hospital you’ll need to get started. It’s something to think about whilst passing the time at the bedside.
Your nurse should be able to tell you which things the hospital takes care of and which are up to you.
Check out our dedicated post covering what you have to get sorted – Don’t forget these 11 legal and financial action steps when your baby is born!
What if we lose our baby? What happens to our finances?
If the worst was to happen, what happens to your finances and immediate future? Money won’t be anyone’s main concern in these awful circumstances, but it helps to know where you may stand.
The cut off is 24 weeks. This is the limit when a lost pregnancy is no longer called a miscarriage and is called a stillbirth. A baby who’s born alive (at any gestational age) who later dies is said to have had a neonatal death.
If you have a stillbirth or neonatal death in your family, you’re entitled to the full amount of maternity (and paternity) leave and pay that you would have been entitled to, based on your circumstances.
If you have a miscarriage, unfortunately you won’t be entitled to these things and would have to consider sick leave if you’re not ready to go back to work. This is an awful situation for those trying for a baby. Take a look at this support site called Miscarriage Action, which has lots of specific and helpful content.
What if you’re struggling?
Many people really struggle to cope with the weight of the stresses, anxiety and emotions that come along with having a baby. For some people these struggles begin to have a major impact on how they live and think. This DOES NOT mean you’re failing or doing anything wrong.
The NHS site linked below says that 1 in 5 women who go through pregnancy will experience a mental health issue at some stage, whether it be a new problem or a worsening of a previous one.
One of my main goals in creating this site is to help improve the financial problems of parents and alleviate the stress and anxiety that goes with them. If you find you really are struggling, whether money is a factor or not, I’ve linked some resources below that I think could really help. Please take a look and talk to someone you trust about what’s going on.
MIND is a charity that focuses on mental health. They have an excellent website offering support, information and listing resources for a range of problems. Their section on postnatal and perinatal mental health is very informative. They have a free downloadable PDF that goes through what everything means in easy-to-read detail and explains what options are available to those suffering.
Other resources include…
The NHS website is really useful for those Mams who are feeling low after their baby is born. Of course your GP is probably the best person to speak to for help.
NCT (National Childbirth Trust) is a great charity that aims to support Mams and Dads throughout the first 1,000 days of parenthood. They want all parents to ‘have the best possible experience of pregnancy, birth and early parenthood’. Click here to visit their very informative and helpful page on postnatal depression.
PANDAs foundation. This is a charity that aims to be the number one support service available for families suffering perinatal mental health problems and illnesses. They have a telephone helpline, email support teams, support groups and facebook pages. They have a Facebook ‘Dads page’ which was developed to support partners affected by perinatal mental illness.
Which charities help families of premature babies? What can they offer?
We’ve mentioned Bliss several times in this article. I believe they are one of the best (if not THE best) sources of support for parents of premature babies in the UK. Their advice is relevant to parents across the world too. They offer support on a whole range of topics such as medical problem affecting your baby, feeding, coping with a stay in the NICU, multiple births, disability and coping with loss.
A charity that both leads and supports research into miscarriage, stillbirth and premature births, as well as ‘providing free, accurate and up-to-date information for medical professionals and parents-to-be around healthy pregnancy’. They have an app and a dedicated facebook support page for parents-to-be.
They have a really informative section on premature births with links to other articles and sources of support. You can access it here.
Each hospital’s NICU
For example, my local hospital is the RVI in Newcastle. They have a fantastic website called Tiny Lives. This site has support information for parents as well as links and even information on some of the topics we’ve covered in this post. Take a look and search the site of your own local hospital to see what they offer.
We’ve been discharged from NICU! What happens now? We might need financial support
A great many babies manage through their early weeks and out of prematurity in good health and without long term problems.
Some babies though begin life with medical problems or a disability. Often problems you wouldn’t think of as disabilities do qualify as such under the law in the UK.
For example if your baby is to be discharged on oxygen, or has had any problem that will impair their development as the grow, this would count as a disability.
Not all premture babies have long term problems, far from it. However, it’s really important to workout if this applies to your baby, as it will open up more support and benefit options to your family as you go forward.
We have a post coming soon on the implications of disability on a family’s finances. Please subscribe to our social media accounts to find out as soon as soon as we publish!
Bliss have lots of information on the health side of taking a baby home, watching him or her grow and eventually go to school. It’s definitely worth a read.
Recap – How are YOU going to save money being a parent to a premature baby
I’ve tried to focus this post 3 things
- Understanding your situation and your rights
- Using all the help available to you
- Reducing little but mounting costs associated with a premature baby
How could our featured young Mam Laura do these things? She could…
- Read this post and visit the websites of the charities we list above
- Make active efforts to see her close friends in order to avoid getting isolated.
- Apply for the benefits she’s entitled to (see above)
- Work out the best way of travelling to/from the hospital.
- Work out a way of preparing meals in bulk for the long days at the hospital.
- Speak to the unit’s nurses about parking, accommodation, times when parents aren’t allowed in (eg certain ward round/handover times).
- Apply for the NHS Healthcare Travel Costs scheme
Here we have a list of questions to ask your NICU / SCBU nurse specifically on the money side of things. We hope they help.
I hope this post has helped you, as a Mam or Dad of a premature baby, to cope with the situation you face.
Please share it with your friends if you found it helpful!
If you’ve been through this and have any further tips or advice or if there is a way I could use posts like this to better serve my readers, please use our contact us page and let me know!