How to keep your relationship afloat when you have a sick baby

You may or may not have known that the two of you were going to be parents to a sick baby. Now that you do know, it probably feels like you've had your legs kicked out from underneath you.

This page is for you, because I so understand how traumatised, tired, sad, angry, overwhelmed and frightened you may feel. Here you'll learn what you can do together - as a couple - to get through this incredibly difficult time, whilst keeping hold of each other and caring for your relationship too.

Dealing with the shock

Whether you found out that your baby was seriously ill whilst you were pregnant or soon after the birth, you're likely to have been in shock for at least the first few days. Once you've barely recovered from the initial shock, you're suddenly left feeling devastated and perhaps desperately frightened that your baby won't survive.

Sadly, many a parent finds themselves in this situation with their baby. Your baby may have been diagnosed with conditions such as heart and lung problems, epilepsy, congenital defects, a birth trauma or a genetic disorder, or perhaps he or she was born prematurely.

My tips and advice on this page apply to you regardless of your baby's age and stage of development. I really hope you'll find this article helpful, whether or not your baby was premature or the problems were only diagnosed after you struggled through your first days, weeks or months together.


The immediate aftermath of your unmet expectation of having a healthy baby...

... may feel like you packed for a holiday in the Bahamas but when you step off the plane you find you've landed in Iceland! You don't understand the language, its culture seems alien and your specially selected summer clothes won't offer any protection against the icy winds.


How did you cope before?

All you perhaps can do right now is cope with not coping. That's all right, it's to be expected (even if it's not wanted) and it's totally normal.

Of course you'll be swept along - in autopilot probably - by all the usual demands; be those the expectations of a job, your other children or any other responsibilities you already had.

How you cope as a couple over the coming months and maybe years depends on a number of factors, such as:

  • the health of your relationship before this happened
  • your individual characters
  • your personal resilience and coping strategies in difficult times
  • your personal awareness and self-knowledge
  • any pre-existing mental health challenges or physical health problems
  • your support system (or lack of it) - friends, family, professionals etc, including your ability and willingness to make use of it

The emotional burden will really test the two of you. BUT, I promise you, you'll probably find that you are much stronger and will cope much better than you ever imagined you would! You're likely to be much tougher than you've ever given yourself credit for.

Here are some ideas on how to prepare...

The 'loss' of a healthy baby - an emotional rollercoaster

Yes, it is a 'loss' and you'll be grieving, even though your baby may survive. Even if you were aware of problems with your baby ahead of the delivery, the sudden realisation that there's something very wrong causes a sense of loss. You were 'expecting' a healthy baby (that is, if you haven't had a baby with problems before). Now you have a baby you weren't prepared for - and that means there's a loss.

What does that mean in terms of coping?

You'll be grieving! That sense of loss is normal.

It's very likely that the people around you will tell you that you're 'lucky' your baby is still alive. However, the chances are that part of you isn't feeling lucky at all. You may find it difficult to express what you really feel, particularly when nobody appears to understand... and even more so if you're secretly hoping your baby dies - for its sake and/or yours.

Premature baby

Having a premature and/or very sick baby creates so much anxiety that your relationship can get lost amongst the fear, concerns for your other children and all the practical challenges you're both facing.

Don't allow all your 'transactions' to be only about that - keep an eye on each other too and talk about how each of you is feeling and coping - if you can.

The endless waiting

There'll be endless waiting:

  • for appointments
  • whilst your baby is having tests or surgical procedures and you can't be by their side
  • for the results of tests to come through
  • for signs that your baby is responding to treatment - medication or surgical interventions
  • for your baby to 'grow out of it'

By the time it's obvious that there's a serious problem your baby may already have had a battery of tests. Doubtless there have been - or will be - an endless round of visits to various clinics with massive demands on your time, your finances and your emotional well-being.

How do you cope as a couple?

How do you cope with the stress and anxieties all that waiting brings?

As I mentioned earlier, it will depend on a number of factors including how resilient you were to start off with, your resources and what other demands you have to cope with in life.

You'll have an expectation of how your partner 'should' act and react. I want to prepare you for the fact that those expectations might not be met...

So, expect your partner's reactions to be different from yours - and from your expectations. Your partner may really shine or, for whatever reason, disappoint you.

You may not understand or like it, but instead of judging them (which is our natural default reaction) honour that they are coping in the best way they can. Accept that the foundations for both of your feelings and reactions are laid in childhood. They are shaped by life experience, and all of the pre-existing characteristics I mentioned above will come into play here too.

Aim to use the waiting - in hospital and at home - as constructively as you can. Help yourselves by focusing on the things you do have some control over (see tips further down).


When there's a crisis, or when you feel overwhelmed with fear...

...remember this tip to help you stay positive and hopeful. It comes from my friend Gisele Guenard, who specialises in positive change leadership*.

Gisele got everyone to join in and find 10 positive things about the situation when she was in the emergency room with her very ill baby granddaughter and its parents. Here are some examples of what they came up with (and they found more than 10!):

We got here in time; we had transport; we are together; there are expert doctors and nurses here; the medication has worked for other babies; we have food, water, cell-phones, etc.


Seeing your baby being in pain

Having to watch your baby endure painful procedures can be hugely traumatic. Your experience will to some extent be shaped by the support (or not) you get from the professionals who care for your baby.

You're likely to feel so helpless at times - totally unable to fulfil your anticipated role of nurturer and protector. You may only be able to observe from a distance or, if you're 'lucky', hold your baby or stroke that tiny hand.

The nerve cell in your brain that causes you to feel someone else's pain as your own - your mirror neurones - will fire wildly: you're experiencing your baby's distress with her/him.

I've counselled parents who would recall some of these moments years down the line as if they only happened yesterday.

Here is a tip to help you cope with that very natural anxiety:

Do all you can to maintain a calm energy around you. Babies (children) are like sponges and are always aware of your energy. So, during extra-stressful moments, calm yourself by focusing on your breathing.

Count as you breathe in, then aim to nearly double the count when you breathe out. Keep breathing, keep counting and keep repeating.

I promise you, you'll begin to feel calmer after just a few minutes.

Tending to your relationship - practically

I'm going to help you now with a few tips which I really hope will help you to make your relationship stronger during this difficult time:

  • Use waiting times constructively - decide on how you're going to deal with all of the pre-existing demands.
  • Make an individual detailed inventory (one for you and one for your partner) of your existing personal demands/responsibilities, including household chores. Break them down into smaller chunks if necessary.
  • Decide individually which things you can delegate and make a separate list of those you can't. Write everything down to avoid 'misunderstandings' later.
  • Discuss together what you think can't be cancelled or delegated and brainstorm solutions as a couple. You're both likely to have an opinion on what your partner/spouse should and shouldn't do, but this is no time to blame and argue - you need your energy for more important matters. Aim to be generous, bold and flexible.
  • Make an inventory of all your resources - your personal ones, those within your relationship, and any help you could ask for from others (friends and family). Explore what help is available at the hospital - you may be able to get support from a social worker, counsellor or a spiritual leader. Also include, for example, members from your church or other supportive organisations. Think also of charitable organisations that specialise in the condition your baby suffers from. List them all and line them up under the headings: 'emotional support', 'practical support', 'advice', 'companionship' and 'all of those'.

A new mother (apologies for generalising with ref to gender!) cannot be expected to do everything that she did before. Her main task is to nurture the baby and in the early months this will take much of her energy.

The demands on her resources will be multiplied many times over when the baby is sick. She will need tons of help and support from the father who will hopefully find plenty of meaning in this incredibly important task! Of course the support from extended family and friends will also make a big difference to how you cope and survive as a couple.

4 tips for an easier life

  1. Help each other to fulfil your basic needs for good nutrition, plenty of water, sleep and fresh air. The more physically resilient you are, the better you'll be able to cope.
  2. Accept help from positive, loving people - whether it's practical or emotional help, companionship or advice.
  3. Don't accept help from people who drain your energy (if you've got the luxury to do so). Practise saying with a big smile: "Thank you so much for your offer - I really appreciate it. I know where to find you if I need more help. You, and so many others, are really kind."
    You can perhaps genuinely appreciate the offer, if not the help.
  4. Look out for help from people you never thought could be there for you. Don't be surprised if previously trusted people suddenly aren't available.
    Look at it this way - your situation may touch a raw nerve in them or they just might not know how to deal with the situation. These aren't excuses, but you can't afford to waste your energy on being upset about their absence.

How to deal with the emotional fall-out as a couple

These terribly difficult times offer you both an opportunity to strengthen your relationship - to show that you can rely on each other when it really matters.

  • Talk about how you're feeling and what is happening! Don't bottle it up - no matter what, you'll both need each other.
  • Accept that each of you is likely to cope very differently with bad news, the waiting, the painful procedures, the sadness, the anger and contact with the medical staff. You may not understand or like the way your partner is dealing with it all. But I urge you just to accept it (after discussion) - you can't change it and now is really not the time to waste any energy arguing about that.
  • Remind yourself frequently about all the positives, such as: your baby is in safe hands, he/she's survived so far, you have each other, and anything else you can think of as a positive and that makes a difference to you. Make a list and read it at least once a day and whenever you need a boost.
  • Take breaks and get any rest you can. When you're tired, as you'll doubtless be, you'll find it harder to consider someone else's needs. That means you're likely to argue more. Again - a waste of your precious energy! 
  • Give new mums a break - they're likely to have mood-swings.
  • Give dads a break - they too can be up-and-down whilst coming to terms with - and adapting to - the challenging circumstances. Remember: you're both trying to cope with the 'loss' and deal with the practicalities of the changing landscape. 
  • If you do lose your cool with each other, talk when you've both cooled down, and above all - forgive! Be more forgiving of general short-temperedness than you might normally be (within reason of course).
  • Take time out together, if at all possible - once a week is ideal: go for a walk, go to the cinema, cuddle up and watch a film... anything that the two of you enjoy doing together.

Extra demand on your finances?

The condition of your baby and the consequent need for you to be available all the time can have a significant impact on your financial situation. Burying your head in the sand with this one is really not a good idea - you need to deal with it as soon as you can.

I really do know that's easier said than done, and it may well need you both to make some major decisions just when you're at your most vulnerable. But ignoring it will make it more difficult to recover later on, so you do need to make it a priority. Have a look at my article on money and your relationship.

How to support each other

Support each other when things are tough and you're feeling at your lowest, and celebrate together when there's good news.

But don't just assume what your partner needs... ask! Say something like:

"I know how upsetting all this is and I want to get this right for you. What can I do for you that would really help right now?" 

Don't be afraid to ask for your partner's help, but set him/her up to get it right for you. Ask for what you want precisely: 

"I could really do with a hug right now"
"I just need a few minutes by myself"
"Please would you make that phone-call for me, I can't face it right now"
"Please will you just listen to me telling you about my fears. I know you want to comfort me with solutions and platitudes, but all I want to do right now is get it off my chest"

If you're specific when you ask for what you need, you can avoid making your partner guess. This makes it much easier and means there's no need to deal with complaints about not getting any support.

Baby in hospital bedSleeping helps healing!

Taking your baby home

It's so easy for a dad to feel completely left out. He's gone from being the be-all and end-all to barely getting any attention at all. But sharing as much as you can will create the most amazing opportunity to nurture and deepen your relationship in the process.

When there's a new baby it's definitely time to let go of your need to lead your own life, particularly under these very challenging circumstances.

So, here's my advice to help keep your relationship/marriage afloat during this difficult time, whilst acknowledging the monumental tasks that await you both.

  • Hopefully you've made your list of chores and divided the tasks with an eye on your ever-changing knowledge, capability, availability and confidence. Be prepared to be flexible and adjust according to needs - both of yours!
  • Take 3 - 5 hour stints in minding the baby, particularly if he or she needs monitoring 24 hours a day. Be prepared to entertain yourself - read a book, listen to music, etc, but be sure not to get too distracted.
  • Take turns, if you have other children, to give them individual quality time and attention
  • Let dad carry the baby in a sling, or help it to go to sleep on his bare chest. A quick Google search will bring up all kinds of ways to help develop that father-baby bond.
  • Don't think that your way is the only way of dealing with baby. Again, you're likely to do things in your own way. Unless your baby is in danger it's unlikely to be a problem at this stage.

Fallibility, medication and crying

You may have come home with tons of medication for your baby and endless instructions. Everything can be changed at home, apart from the medication and any medical procedures. So be organised with the medication, and let yourselves off the hook when it comes to the stuff that's less important...

  • Be prepared for the fact that you're both likely to make mistakes, as will the people who help you. You can do all you can to prevent errors, but you're human and fallible - possibly sleep-deprived, tired and emotional to boot - so try your best to make exceptions and forgive.
  • If you know in advance that your partner is more likely to make mistakes, for whatever reason, do as much as you can to help them get it right instead of criticising. If a mistake is made - of course you're going to be angry, that's normal... but don't waste energy arguing - it could have happened to you too.
  • Your baby may continue to cry despite your very best efforts. Don't accuse each other of not getting it right! You may just have to develop a resilience against the crying after everything has been done, and come to terms with the fact that it is what it is.

Finally

I so understand how desperate you may be feeling right now about the immediate and perhaps long-term future of your baby and your family. I really hope the help and advice on this page has been a comfort to you.

I wish you lots of strength, patience and above all hope. I suspect there'll be a point at which you'll reflect on how strong you really are and that you'd never have thought you could cope with all of this.

But if ever you reach a stage that it all becomes too much, promise me you'll seek help - because there are plenty of resources out there to get you through this traumatic time. You can always talk to one of our expert counsellors here.

Related articles

Other helpful links

Dr Mercola - Essential oils for stress

Acknowlegment

*Gisele Guenard - Visionarease.com

Do you want to save your relationship? Or are you keen to improve it...

Get an online professional, licensed relationship therapist to help you now

Your problem is never too small or too big, too silly or too complicated to ask for help from a relationship expert.

Connect with your therapist as often as you like in confidence (no need even to give your real name).

Get help now in 3 easy steps:

  1. Click the image below and fill in the two online questionnaires (it takes just a few minutes)
  2. Complete the sign up process
  3. Choose how to pay (it's safe and secure)

Then all you need to do is write down your troubles!

Regain your joy, intimacy, companionship, trust, passion, communication, friendship, affection...

Click the image below now to start:

Available on the App store and Google play

I want to upfront with you - I earn a commission from BetterHelp. This is how I earn an honest income, whilst giving away a ton of free information throughout my site. You pay the same fee, regardless.


Found this page helpful?
Pay it forward - like and share...

Comment, help or be helped

Elly Prior

Hello you! :-)

It's me - Elly Prior, I'm the Founder and Author of this site. I'm a 'real' person! I'm hoping to make a positive difference, small or large, to every person who visits my site.

Do feel free to ask for help. I would be delighted to write a few lines to support you (please keep it short).

Alternatively -  there are licensed therapists waiting to help you right now. You can connect with a therapist as often as you want on any device, whenever it suits you. For further information, see my page: Online Relationship Advice.

Images courtesy of: Cheryl, Madeleine Ball, Marv Gillibrand