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.
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.
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 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...
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.
There'll be endless waiting:
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 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.
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.
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:
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.
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.
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.
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.
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.
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...
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.
How to Recover From a Traumatic Birth
Signs and Symptoms of Depression
Signs and Symptoms of a Nervous Breakdown
Pregnant with an Unsupportive Father
Should You Sue for a Birth Injury?
How to Deal with Stress
Dr Mercola - Essential oils for stress
*Gisele Guenard - Visionarease.com